Yesterday got pain under ribs and worst ever pain ever across middle upper back. Spoke to locum gp who said it could be acid reflux or due to reduction.
told to take additional stomach protection and go back up to 13mg. I felt really panicky late last night! Couldnt lie down in bed. This really got me "emotionally". Sorry to rant!
Is this just part ofthe "course" I hadnt yet experienced.
best wishes to everyone
I think you should make an appointment to see your doctor. Those symptoms are identical to mine when having acid reflux. Mine is due to a badly placed hiatus hernia but as long as I've got plenty of Gaviscon about, it's no big deal to manage.
Thanks. I forgot I also have gallstones! Actually put it off my radar! Been taking gaviscon. Its easier today. Will speak to gp.
Never apologise for having a moan - if you need it you need it and we know what it's like to live with PMR, unlike your family and, dare I say it, your doctor.
I get pain similar to this and have done for a long time - in my case it is muscle spasm and sometimes in in the low back, below the waist, sometimes across my shoulder blades and sometimes into my neck. It is possibly due to something called myofascial pain syndrome where trigger points that correspond to where muscles are attached to bone form concentrations of cytokines - these are the inflammatory substances that cause the aches and stiffness of PMR when they are in general circulation and probably cause the "trigger points" identified in fibromyalgia but there there need to be loads. You go along for ages and everything feels OK and then suddenly you do something that the muscles don't like and they go into spasm - causing this awful pain. I ended up on hospital a couple of years ago when it was the sacroiliac joints in the pelvis that siezed up and I couldn't move.
An orthopaedic specialist who does research in this told me he thinks it appears more often in people with PMR and that at higher doses it fades as the pred has an effect on these trigger points. Keeping at a high dose of pred to deal with them is a bit like taking a sledgehammer to break a nut though. Gentle massage and mobilisation by a massage therapist or physio done consistently until it really is better will deal with them - you can identify them both by the pain in one spot and a knotty feeling in the muscle - and I had a session a couple of days ago and my back feels so much better already though there is still a bit to do. Previously, after being in hospital, I have had cortisone injections into the trigger point to get a high concentration of pred in the area and that also works well - but that is a recognised part of medicine here in the Germanic part of mainland Europe and it seems more difficult to get someone in the UK to do it. In the UK I also found a Bowen therapist worked magic and a few ladies with PMR have tried that in the last few months and also had good experiences.
In the meantime, try sitting upright in a supportive high backed chair with a hot water bottle or heat pack over the sore bit to relax the muscles. Use pain relief - ibuprofen would be best if it doesn't upset your stomach but be careful with that when taking pred, always take it with food: a meal, not just a biscuit. If not, take paracetamol, full dose every how-ever-many hours (tells you on the pack) to the maximum allowed in 24 hours (no more and don't drink alcohol in the meantime). It should improve in a couple of days. If you are using my reduction plan it shouldn't have been enough drop for this to be steroid withdrawal pain but a bit more pred won't hurt for a few days.
Thanks.
Did just what you said. Hot water bottle in lounge all night in high back chair! Did drop off though!
I'm using your plan and its worked really well so far. Upped the pred to 13 (from 12). Its settled into my usual "spot" now by shoulder blade.
Taken paracetamol..
not such a mysery today!
annihami, ouch! I experienced something very similar on just one occasion during my PMRGCA days. The pain and tenderness in my ribs made it difficult to move without wincing - it lasted a few days and then just disappeared never to return. I do hope your's resolves quickly too but always wise to return to the GP for further investigation if it doesn't clear in the next few days.
I don't want to contradict you, Pro, (no, really!) but just in case this pain is being caused by reflux and/or hiatus hernia, it would be a mistake to take ibuprofen. I am strictly forbidden to take it or any other NSAID because of a chronic reflux problem and hiatus hernia - and it's not good with pred either. I have to make do with good old paracetamol.
Hello.
thanks for your concern.
But in my case - I can't take any anti-inflammatory drugs, or asprin,
As im alergic.
Whats your thought on paracetamol/codeine - very infrequently?
I have a sneaky suspicion it may be a mix of both. (Been googling - bad move I know).
Thanks everyone!
For being so supportive.
My brain goes into overdrive.
I know I'm lucky as so far I've been able to keep going reasonably well.
Best wishes. Ann
Co-codamol is a mixture of codeine and paracetamol. The higher dose tablet is available only on prescription, but a lower dose is available over the counter. Anything with codeine makes me woozy, so I am stuck with paracetamol.
Shortly after I began taking pred I experienced the most horrendous pain in the mid line and through to my back. I had never experienced anything like it - it was so severe my husband called the doc who summoned paramedics who took me to hospital...where after many tests a gastric spasm was diagnosed.
They gave me a muscle relaxant drug to take and that really helps. As it is fairly fast acting I only take it at the onset of the pain...which because it tends to happen around the times when there is a change in pred dose led them to confirm that they believe this is pred related and once I off pred this should no longer be an issue.
Ranatadine is an alternative which works instantly for me. I've had more frequent acid reflux since being in prednisone and it comes on extremely quickly. In my case there is a slight hiatus hernia and I have even had relief if I act quickly enough by drinking copious mounts of water
PPI's
The link to the programme transcript is attached below. You need to scroll down to the last interview with Anton Emmanuel. It seems Lansoprozole and similar acid inhibiting drugs are very difficult to come off after prolonged use. They can also inhibit digestion of certain vitamins and minerals. None of this is mentioned in the drug information leaflet. Reading the article it is making me wonder whether the side effects outweigh the benefits.
bbc.co.uk/programmes/b03q8z4k "
You could try the following, it works for some people just fine.
Acid Reflux (Heartburn).
Fortunately there are effective, natural alternatives. You can supplement with a good digestive enzyme formula to reduce the need for stomach acid. Take a teaspoon of apple cider vinegar mixed with water and a little honey at each meal. Drink less with your meals. Fluids dilute stomach acid, which triggers the stomach to produce more to compensate. Eat less at one time. This allows the body to digest your meal with lower levels of stomach acid required
Or the juice of one lemon, divided into three, add to glass of water three times a day. If you put the lemon in the microwave for 1 minute – twice as much juice.
There was a letter issued by the Dept of Health to GP's advising that all patients on PPI's long term should take probiotics I just don't know when issued and cannot remember from where I got that information.
In addition to Sambucca's suggestions: there is evidence that a low carbohydrate diet can improve acid reflux in many patients.
Thanks once again.
Had bloods taken to day. To check levels.
Will try the remedies you suggest.
It certainly was a very unpleasant episode. Its eased off. But have eaten very little since friday. Best wishes. Ann
Interesting reading about the muscle spasm. In my early days of PMR (six years ago) I had an awful six months of what I could only describe as muscle spasm in the muscles between my ribs. All of a sudden it was like someone had stuck a dagger in me and I'd tense up completely with the shock, and hardly breathe because it was so painful. Had to learn to calm myself down and take slow and gradually deeper breaths, then if I was out, get home as soon as I could and sit quietly. It felt like this happened because my back was too vulnerable being unsupported. A supportive but comfy high-backed chair was crucial and I learned NEVER to sit on anything that didn't have a back. Also had to limit my walking and standing to short bursts. Luckily each episode only lasted about half an hour but they were really scary. Looking back on it now, it started when I reduced from 15mg to 12.5mg six weeks into the PMR and I think I was basically on too low a dose, but my GP said just to keep persevering and said she'd never heard of muscle SPASM as part of PMR. I think it started to go away when eventually the level of my inflammation dropped enough to be covered by the dose I was on if that makes sense. And then I started on a much slower reducing regime which was better. Touch wood I don't get it now, but am describing this in case it helps anyone else with the same symptoms. I think it's particularly hard dealing with pains in your back because you often can't get to them and the core muscles really are core, so when they seize up it feels like you're completely floored....
Hi Folks.
I'm still here! Had 2 blood tests. 2 visits to GP. He feels my gallbladder is playing up, together with gastric reflux. Gave me buscopan and a bland diet.
Glad to say today I feel better. After a horrible few days.
Still got back pain and hurts to cough. So I think back to gp.
on a light note - am supposed to be walking 5k Race For Life this Sunday!
My daughter is planning to push me in her redundant wheelchair!
She had kidney cancer last year and is 12 months clear now!
Thanks again for all your support. Ann
HOW CAN THINGS BE SO DIFFERENT FROM ONE DAY TO THE NEXT!
Not sure if its really PMR
Flares and breast surgery 
Thanks for good wishes ;(
EMG test not the end of the world
