Have been on steroids for 18 months have another 6 months to go. My pmr is ok, however the side effects of steroids is not good. I have osteoporosis and last year fractured a vertebrae in my spine. on boxing day i came down with shingles, oh the agony is so bad, i just feel like. The doctor said it's all down to the steroids. I just feel like throwing them in the bin , i feel so poorly.
What does anyone think about that?
Side effects are not pleasant most would agree, but then neither is untreated PMR. So although you may feel like throwing steroids away, please don’t.
Sorry to hear shingles, hopefully you contacted GP as soon as possible and we’re treated with anti-viral drugs.
With respect to your osteoporosis, what treatment are you on for that?
What dose of Pred are you on at the moment?
This post put up yesterday may help with side effects - healthunlocked.com/pmrgcauk...
..and your doctor could be a bit more sympathetic, he may not like steroids, who does, but they are necessary for lots of people and blaming them for everything isn’t helpful.
Hi dorset lady, thanks for your reply. Yes, i know how horrid pmr is so i should realise the importance of steroids. Yes i contacted a gp straight away, he wasn't my gp it was through111 because of the holidays. He was very good, he was just stating the side effects. With my osteoporosis i am under the osteoporosis clinic and have an injection prolia every 6 months. I am just having a bad day today it's the nerve ending pain of shingles that is awful.
My sympathies on the on shingles…🌸 and if your weather is as dreary like mine, that doesn’t improve things either.
He is making sweeping statements - I've been on pred for PMR for a long time (13 years) and in that time my bone density has hardly changed (no bisphosponates either) and never had shingles. OTOH, I have friends who had awful shingles having never taken pred. There are ways of reducing the risk of osteoporosis - but have you any proof it was the pred and you didn't already have low bone density pre-pred?
Come to that - the obvious suggestion that PMR only lasts 2 years is also a very sweeping statement, About a third are off pred in 2 years or less. That leaves a lot of us who need it for longer.
HiaI was diagnosed with osteoporosis nearly 30 years ago. According to my consultant and my consultant nurse steroids can make it worse. I didn't say steroids caused osteoporosis, i haven't got a clue on that one.
Doctors usually tell you it does - the real answer is it CAN lead to reduced bone density. But then, so can the PPIs (stomach protection) that they tend to push with pred. A lot of doctors tend to make pred a very black/white story, mostly black!!!
Hello mustcarryon. You are are obviously feeling really poorly and you have my sympathy as you are coping with the pain of shingles which will make you feel very low. If your doctor has told you that you have six more months on prednisolone this is grossly unfair and is added pressure for you unless he has a crystal ball that tells him you are going to be in remission then. Time doesn't dictate the need for steroids- inflammation does and doesn't switch off according to a timetable. That aside, I sincerely hope that the shingles pain subsides soon so that you'll have the mental and physical energy to cope with your exisisting cconditions and especially the osteoporosis. It's all too much at the moment ☹️. 💐
Why are some doctors so irresponsible? The PMR dictates how long you will need steroids not your doctor or their text books. Shingles is a horrible thing to have, I am so sorry for you.
I'm so sorry you are unwell with Shingles , no wonder you feel so down in the dumps.
You are not fit for a debate at the moment , just rest , plenty of fluids , relax and breath deeply and get over that infection.
The steroids will actually help reduce the chance of your PMR flaring up and adding to your current woes whilst your body is under attack from that nasty infection , so please don't throw them away just yet.
More often than not the steroid side effects risks are outweighed by the benefits it will give you .
Many people have Osteo conditions and injuries and take steroids , it is just that some things they do may change a little to reduce the negative effect steroids has on them and reduce the chance of them having new injuries.
When you're over the Shingles you will feel more able to make clear decisions and feel up to asking lots of questions in posts to us here about which side effects you have and the members will give you lots of pointers and tips to help you reduce them.
They will include ways to reduce the steroids affect on your Osteo problems.
so please write back and let us help you when you feel a bit better.
For now , big virtual hugs and wishes for a speedy recovery , Bee x
Has your GP given you calcium and vitamin D to help with osteoporosis?
I empathise with you mustcarryon. I had shingles in September, luckily I managed to get the antivirals on the first day. I found the aqueous calamine cream from Boots, helped a little with the itching and pain, also bathing with cold flannels. I kept the cream in the fridge so it was very soothing. The GP was about to prescribe amitryptiline for the pain but then said no because I’m on hydroxychloriquine and apparently they don’t mix! I think I was on 2 mg of pred then and the rheumy told me not to increase the dose. I managed to get through it , still have sensitivity around the rash area. I hope you feel better soon, there is light at the end of the tunnel x
Please take the advice above and try and get some antiviral drugs for the shingles. It can sometimes be very nasty and I know two people who have been seriously affected by it (I won't go into details as I don't want to scare you, but neither of them were immune suppressed). Take care of yourself and get well soon.
Too late now for antiviral drugs - need them first 3 days for best results, but may help in first week
Every sympathy re the shingles. But I should think that at the moment you feel like throwing everything in the bin, so don't take it out on the poor old pred!
So sorry to hear of your illnesses which will be deeply uncomfortable.I was a bit surprised to read you will be 'off' steroids in 6 months: from bitter experience, I was given a sack of pills to take when I left hospital and informed I would be okay and that the 'problem' would last two years. I took pills as directed, felt fine, and returned to work - not realising that pills were huge prop in the recovery. I collapsed again within 3 months, though not hospitalised, informed it was a marathon not a sprint - by a different Rheumy - and I am now 5 years on, with very little prospect of reducing steroids much below about 5mg/day if I am lucky (seems body just doesn't like reducing below that level?). I am listening more to my body and am resigned to not working (work and I parted ways three years ago), so at 62, I am becoming acclimatised to a very simple life managing what I can each and every day. It is very hard indeed given previous lifestyle, but tremendous support (this forum and my family) has got me to this point and I muddle on with daily drugs and slow existence.
Please listen to your body and learn to manage symptoms, which are very different for each and every one of us. No doctor or specialist knows ourselves as well as we do and certainly no 'book' can describe what we must face on a daily basis .
I wish you well for your present recovery, and in the longer term for a strong and steady overcoming of PMR.
There cannot be many PMR sufferers who have not, at one time or other ‘cursed’ the use of steroids to bring their symptoms under control - and all the different side affects they cause.My two major ones have been Shingles (in my private parts!) and an unacceptable weight gain resulting in facial features resembling a Hampster. I broke my arm 18 months ago - and was advised to go on Alendronic Acid which I have stubbornly refused to do, as my bone density scan was ok.
We all have to live with these different side effects if we do not want our debilitating PMR symptoms to return so just see if you can weather the present storm, so to speak.
When first diagnosed, my GP told me “. . . may take up to two years to go”. It’s been four now. He was probably looking at his text book rather than learning from patients’ experiences.
My perception is that, with the help of helpful sites like this one, the ‘ignorance’ shown by some medical professionals may be starting to go, replaced by actually listening to the collective comments of PMR sufferers.
Things will get better for you with the steroids - but it may take longer than two years.
Ensure you have regular blood tests at your surgery so your Inflammatory Indicators can be monitored - I have to remind my GP to do this.
Good luck.
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