I was diagnosed with PMR at the end of July and started on prednisolone straight away. My GP did warn me that I would need to take them for probably a year and I sort of new the side effects. But inflammatory marker was 82 - I had felt unwell for several weeks and was in so much pain with the PMR I knew I had no other choice.
My GP's have been great, and I have had regular blood tests and I was getting on fairly well. Inflammatory marker down to 12 and after discussion with GP felt I was in control of tapering - just stepping down from 15 to 12.5 didn't work so went back on 15 and now trying the 5 week slow taper. I had plan even if it was going to be a long one.
But last week my blood pressure shot up and I had retained so much water I was constantly breathless. Also getting terrible headaches (at the back of my head) GP saw me straight away - had chest xray and more blood tests. Inflammation now up to 18, I'm on blood pressure tablets and diuretics, as well as the other meds to protect my stomach and bones. GP has again written to Rheumatology specialist asking for an urgent appointment in case they can better advise on treatment.
All in all I feel very unwell and very shaky inside. Cant even summon the energy to paint today - and every tablet I take seems to cause more problems to my poor stomach.
I thought I had a plan - but now my body has so many more problems because of steroids.
I wonder if this is a common problem
Felling a bit fed up really🙄
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Strippy
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I think the reduction from 15 to 12.5mg might have been too much for you, it was for me. Sensible to go back to 15mg. Your doctor seems very sensible and seems to be looking after you well. If your doctor can arrange a rheumatologist that would be good. Meanwhile just rest,rest,rest.
I'm sure you are feeling a bit fed up - no doubt the GP conveyed the idea that once you were on pred everything would be hunkydory? Afraid not - it is a long and sometimes rocky road which I fear is likely to last a lot more than just a year. Sorry.
Since the inflammatory marker has risen, that shows the underlying autoimmune disorder is very much alive and kicking - and that in itself can make you feel quite unwell, sort of fluey.
Has the headache at the back of your head improved? If not, then your GP must consider whether your PMR is actually a symptom of GCA since it an occipital headache are both signs of GCA.
You need to be very careful if taking both pred and diuretics - it can cause you to lose potassium through the kidneys and it seems to happen in some people whatever sort it is. Cut your carbs and dietary salt as both can cause fluid retention when on pred.
In the meantime, behave like a poorly person - rest and get all the TLC you can.
Sounds as if something, ? the pred, has tipped you into a spot of heart failure? If you aren't decently better after your last GP manœuvres you should get back to them ASAP. May need a hospital sort out........eminently fixable.. just a bit complicated given your various meds.
As others have said it is not unusual to discover that your system gets a little out of gear with PMR and steroids and it will take a while to sort it out and find some balance.
I am just ahead of you in terms of diagnosis and have had similar ups and downs to find some stability. Very low blood pressure for which I was already on medication for high blood pressure. Drs thought it was the low potassium so took supplements along with magnesium as having awful cramps. Had to mess about with the blood pressure meds, BP all now back to my normal after several weeks. Heart palpitations now as had to go back up on the steroids for a while, improving with potassium again. Have a look at your blood results and see if you can see what is out of kilter.
The shakiness was definitely a thing for me, that has also settled as many of these things do after a while and will do when you are able to reduce slowly and carefully.
It's a shock when you are diagnosed with something you have never heard of! You are still very early in coming to terms with this, honestly it took me a while to really accept that this is a long haul but if I am sensible (haven't always been) in terms of rest, not going too fast reducing, learning everything I can from the knowledgeable and supportive people on here, it will be alright.
So, we have your back, keep us up to date and sending a hug.
It doesn't matter what you experience - there is a very high likelihood SOMEONE on here will have been there before you! So never feel you can't ask about something - no silly questions, if it is bothering you, it is a problem. We are here to help.
I really go up and down and can have a few days where I feel really well, and other days or weeks where I feel particularly unwell. I've been on 5-6 mg for months, and apart from a brief excursion up to 10 mg early this year and the starting dose of 15 mg, I have only ever been above 7.5 mg for about 6 weeks in total over the last 18 months. Definitely not the taper for me. And I am on nowhere near the same number of meds as you, just the pred. I've seen one of the symptoms of PMR described as a general feeing of malaise in several places and that probably describes how I feel quite a lot of the time. A healthy diet, plenty of rest and swimming seem to help a bit, but there are days when I just feel meh and have to give into it and take it easy. I wish I had a magic cure, but unfortunately, I don't. I get the fluey feeling that pro describes and I got that before a diagnosis of PMR and before I was taking pred. To be honest, I had thought that just feeling crap was part of having PMR, but judging from some of the comments, maybe that is not the case. I am mindful of the fact that it is possible to have more than one thing wrong at the same time, so I don't think we should take our symptoms for granted and if there is a change or it is getting worse, it's a good idea to get it checked out.
Sorry Strippy, it would not be correct for me to advise on prednisolone when there are others better qualified like PMRPro. I have not practised as a pharmacist for more than 30 yrs.
I was diagnosed in early July and, apart from a good initial response to the preds, when I thought everything was going to be very manageable, I have had a pretty rocky ride and still not settled. I can also have a few days feeling pretty good, and then several feeling pretty rubbish. My legs ache constantly and sometimes really hurt, and my head can be quite fuzzy at times. I also really know it when I've done a bit too much, it just knocks me out and I'm fit for nothing. I'm due another blood test as my GP wants me to start reducing the preds but eventually she's suggested perhaps we should look at my blood results first!!! Have to wait from last Monday to next to have the test. Just hope the GP will get back to me quickly. I sometimes feel shakey too and worry a lot about what else is going on.
It's very reassuring to learn, through this really helpful group, that other people often feel the same. It's certainly a strange journey!!
Yes, I can sympathise with the shock element. I do find this group a comfort as there is always someone who will respond and you find there are plenty of folk going through the same thing.
I did, so I stopped taking it after 3 weeks. I was 49/50 when I developed PMR (seen on PET/CT, text book case but my rheumatologist has messed me about no end regarding diagnosis because he says no one my age gets PMR 🙄. I’m about 3/4 years in. Not bed bound any more but 95% housebound. My trigger for PMR taking hold was extreme stress.
I had a horrendous time on Pred at the beginning. Didn't sleep hardly at all for 4 months. Terribly shaky and jittery. Emotionally wrecked. Weak. Fatigued. Rapid heart beat. Blood sugar raised. Weight gain. Osteoporosis. Ive never gained weight in my life before. I had to taper more slowly than the original plan but gradually things improved. I didn't work for 10 months. I'm a writer. But since July I've been working again just 2 or 3 hours a day. I still have extreme fatigue but I have a life of sorts and for now thats enough. Your case sounds complicated and I hope you get the help you need quickly. Hopefully then things will settle down and you'll feel more in control. Good luck and a very big hug x
Corticosteroids, such as prednisolone, mimic the natural hormone cortisol. Unfortunately, cortisol regulates many things, as well as the specific strand of our immune system we wish to dial down. This makes side effects inevitable.
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What should I expect?
Not sure if it is PMR now
Is it OK to regulate yourself on Prednisilone?
What do I ask/say to my rheumatologist this Thursday?
