Life changing experience!!

[paah]

Being a reasonably fit and active 71 year old nothing could have prepared me for the PMR experience.At my age I have a touch of arthritis in my most active joints, so when my shoulder muscles started becoming painful last August I could not work out what was happening - it felt if I had walked into something or fallen out of bed and bruised my self, but I hadn't, mobility was the next thing to suffer- difficulty in getting out of bed, dressing, tying up shoe laces etc became really difficult.What really clinched me seeking advice was a very high fever I had - as if I had sun stroke.

Off to the Doc who immediately sent me to the local Path Lab who extracted sufficient blood to carry out 17 tests out of which 3 showed evidence of PMR. Within minutes my GP had me on Pred at the rate of 60mg's/day , within 24 hrs I felt great - as if by magic I had no arthritis pains either, life was great!! no it wasn't - I had run out of puff - no energy to speak of at all, I felt like a battery that had lost all it's power it was no good pushing your self, their was nothing to push.

Very gradually I have reduced from the original 60mg's/day from the beginning last Aug down to 10mg's/day, I have to say that on occasions I've reduced the dosage too fast and have to increase for a day or two. I have only once forgotten to take the Pred and it was a really painful experience.

It is only in the last 6 weeks that I have seen a Rheumy and on the two occasions he has reduced Pred intake by a large margin, but at the same time giving me a 120mg's jab of Depo - medrone - this seems to be doing the trick.

My two major issues are weight - I have put on at least two stone - I think this is beginning to come off now since I have reduced the Pred dosage. Energy level is the other issue and since I still work that really bugs me

[Celtic PMRGCAuk volunteer]

Hello paah

Your story of your "life changing experience" with all its symptoms will strike a chord with most of us, except with me the painful symptoms didn't start in my shoulders but in my legs, very suddenly when I started out on my usual weekly walk with a friend one day, when I found I was having to force each leg to take each step - a robot comes to mind. From there it was all downhill as both GP and rheumy failed to diagnose me, so I ended up not being able to even roll out of bed or turn over, with subsequent hospital appointments being by ambulance and wheelchair. Unfortunately the undiagnosed and therefore untreated inflammation eventually led to far more serious symptoms and I was finally diagnosed (with the help of a brilliant pharmacist!) with both PMR and GCA.

How frustrating that you have had a couple of setbacks as a result of reducing in too large steps on occasion, especially when you have done so well in getting down from 60mgs to 10mgs in a relatively short time. It seems that the 10mg and 5mg doses can be sticking points for many people (for me it was 5mg). If you are someone who had raised markers at the outset, then these should ideally be carried out before each reduction - if the inflammation markers are raised, then the reduction should be delayed. However, I'm quite surprised to hear that you started on such a high dose of 60mgs for a diagnosis of PMR - that is usually reserved for patients with GCA symptoms.

I found with the weight issue that if I restricted certain foods, especially refined carbs and sugar, plus all processed foods, my weight stabilised with just a half stone increase. I also included many known diuretic foods into my diet, such as asparagus, garlic, fennel and melon, to help with the fluid retention side effect of the steroids.

The low energy levels are difficult to cope with but this does improve as you get lower on the Pred. It must be so difficult when you are still working - I'm always in awe of people who have to work with this illness. However, well done you to be still working at 71 and long may that continue (my hubby is still working part-time at the age of 77!).

[paah in reply to Celtic]

Hello Celtic

Many thanks for your response to my blog. Yes I am still working at the age of 71 as one of a ever increasing number of self employed I wouldn't have it any other way, regardless of the fact that sucsessive governments have conspired to reduce ones pension portfolio to that of "Micky Mouses sweety fund" - you have just got to keep going.

I am sure given that we are living and working longer , little known ailments such as PMR are coming to the fore in the old days you would have been diagnosed with rheumatism or lumbago and that would have been it .

[2watsons]

You have described just how i felt ,we used to do lot of sailing and damaged my shoulder picking up mooring ,then pain in shoulders neck was so bad went on predisolone off in a year then 5years later returned i had GCRon 60mg to try and save my eye now down to 7.5mg my weight did not increase a great deal but as reduce predisolone almost back to normal ,good diet ,some exercise when feel like it ,as you said feel like battery has died ,mine now some days has been re-charged .So good luck ,this awful thing called PMR GCR affect us out of blue need more research in to .

[or01ah]

Hello Paah

I read your post with interest as I was diagnosed 7 weeks ago. My symptoms started in my jaw, neck and back. i saw my GP on October who told me to take Ibuprofen. I went to the dentist who said my teeth were fine. Pains continued until 7 weeks ago when

[or01ah]

Sorry Pc went mad will continue now. First GP said I had flu,,, second one took blood and my markers were up at 50 so put on 40 mg of pred, now on 20 and blood down at 11. I also am having problems with fluid round the midrift, moon face and swelling around my knees at night. Also find night bad for munching!!! Will take on board the diuretic foods and I avoid all deadly nightshade. I am 55 and have been back at work 2 weeks. Tiredness is a problem and prior to diagnosis was doing 3 exercise classes a week and walking 3 miles daily to work. i thought the pains and stiffness must be old age. Hope you have a good weekend.