My Story

[jules1955]

Hi everyone, I have been reading posts on here for a few weeks now and have found them very helpful, so I thought I would share my experience. It started last summer in August, I have suffered with low back pain over the years, if I did too much gardening or too much lifting at work, but the pain became more constant and started to travel down the backs of my legs, as if I had pulled all the muscles. To sit down or to stand was so painful, the Doctor suggested Physio and to cut a long story short I was off work for about 5 weeks, went to Physio, Bowen, Chiro and had Acupuncture. Nothing really helped, but eventually the pain subsided in my legs, but I still had the lower back pain, I'm 60 and have always worked, had a Hotel for over 25 years, bed making cleaning etc, you just think wear and tear, age etc so just take pain relief. Around late October time I started to wake up with a stiff / painful arm, like I had slept awkwardly on it, during the day it would wear off. Then it was both arms, and I started to find lying on my side ( shoulder area ) very uncomfortable. Eventually I couldn't lift my arms above my head, it felt like they were super glued to my body, I couldn't dress myself /shower / do my hair properly. In bed at night I couldn't turn over, would end up crying in pain and frustration and started sitting in a chair in the middle of the night to try to get relief. The Doctor didn't know what the problem was, I thought it might be related to my back problem ? or trapped nerve ? so she sent me for Xrays and keep taking Ibuprofen. They did blood tests but nothing showed up. I eventually went sick at work, I just couldn't understand what was the matter with me, felt so tired and weepy. I started to google my symptoms and eventually found PMR which I had never heard of. In early December I phoned my Doctor and suggested I might have PMR she said it had not showed in the blood tests but that it didn't always show up and that sometimes they prescribe Prednisolone to see if it helps your symptoms. After all the weeks of agony I would have tried anything ! In just 2 days of 15mg per day all my pain was gone, it was like a miracle cure. It was just before Christmas and I felt so much better. After only one month on 15mg the Doctor suggested reducing to 12.5mg which I was on for 8 weeks and although I do not have much discomfort in my arms, my low back pain seems constant if I am standing/walking and I do not feel as well as I did. I go down to 10mg today and am hoping I will be ok. The recent blood tests show the inflammation is coming down, I do still feel overwhelmingly tired some days and weepy and bad tempered. I find the steroids make me feel bloated and have painful wind also leave a horrible taste in my mouth. I have to take Alendronic Acid tabs once a week and the Doctor has just prescribed a 'Tummy Protector ' which I pick up today. I have been off work for almost 4 months and can not imagine returning while feeling like this. I think it is hard for others to understand what you go through with this disease and how long it takes to recover. I will keep you posted.

[Celtic PMRGCAuk volunteer]

Jules, my main advice would be NOT to reduce any further whilst you are feeling like this. In fact, as you had such a remarkable response to your 15mg starting dose, it does sound as though you may have reduced a little too soon or by a little too much for your level of inflammation to have truly stabilised in 4 weeks.

I don't understand that if you didn't have raised markers of inflammation in your blood test at diagnosis why you are now being told that recent tests show the inflammation is coming down?

You might be wise to increase back to 15mg for another couple of weeks. If that solves your pain, then perhaps just a small reduction to 14mg would be easier for your body to manage next time around.

As far as Alendronic Acid is concerned, unless you have already had a DEXA bone density scan that has shown you have osteoporosis, then you may not need the AA. It is only advised to be taken for 5 years anyway, so best to avoid until really needed.

Taking a small pot of 'live' yoghurt with your breakfast before taking the steroids may be enough to resolve your gastric issues. A few squeezes of lemon juice in warm water before your meal can also help - the acid turns alkaline in the body.

If you haven't had a Vitamin D blood test, then do ask for one. A deficiency can lead to pain in similar areas to PMR. Many of us have been found to be deficient and all that is needed is a 3-month course of pure Vit D3 to increase our levels to normal.

[jules1955 in reply to Celtic]

Hi Celtic, thank you for your reply, I have had 2 blood tests since being on Pred and the Doctor said the first one showed the inflammation but said I should reduce to 12.5 mg and next blood test showed it was going down and to reduce to 10mg. I have told the Doctor how I am feeling, maybe she is not up to speed on PMR. She has never suggested blood test to check vitamin D and consultations and prescriptions are by telephone. If I am still feeling like this at the end of the week I will suggest to up the dose again.

[PMRpro Ambassador]

Celtic has already said it. If your blood tests are still coming down don't reduce until they are steady - particulalry since you still have quite a few symptoms it seems like.

But you said at first your bloods didn't show anything - so did they rise later? - ah right, have found your reply.

No, I would ask to remain where you are for another few weeks - if you let a flare get in now then it is often all the harder to manage a second time round.

Your low back pain could be something else - and a bit of diagnosis there, maybe from a physio might help.

[Rose54]

Hi

My story is nearly the same as your self diagnosed Aug 14 Started on 15 preds

4 months off sick .I returned to work full time in November.

Today I am reducing to 10.5 preds from11 please don't try to hurry reducing you will be no better for it .

Its taken me 2 months to reduce by 1

I only do .5 at a time and only when I feel ready .

I am 62

Best Wishes

Rose

[Rose54 in reply to Rose54]

sorry should read Aug 15

[jules1955]

Thanks Rose, I just assumed that the Doctor knows best ! And that to reduce Pred like this was usual, until I started reading posts on here. Has your Doctor told you to reduce when you feel ready ?

[Sheribrim]

Listen to your body. Don't reduce too quickly and even ask to go up in dosage. If you reduce too quickly then your pain will return. It's just not worth it. It took me two years to go from 20mg to 5mg and the I had flu at Christmas and I'm now back to 18mg. If you reduce and feel pain then tell the Dr . Hope this helps. It is not a magic cure but allows you to get your life back. What's the point in spending your days unable to enjoy life?

Listen to your body and enjoy life.

[jules1955]

Quick update. Spoke to the Doctor, but she wants blood tests first, so going tomorrow for this and then results on Wednesday. My Husband thinks a holiday with a little sunshine would do me good ? ? do I have to disclose PMR for insurance ? ?