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29 January 2018
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My Story

Alan

So Brenda where's our camping trip to be this year"? "Let's try Norfolk and Suffolk we haven't been there before" is the eager reply. We have been married nearly 40 years and have camped once a year at a new destination each year either in the UK or Europe i.e. Norway, Iceland or wherever!

I am 65 in June 2009 and you have guessed it? A man! In May 2008 we had just completed part of the Pennine Way, walking for 5 days and about 15-17 miles a day. I had felt unusually stiff and started the day with a couple of Ibuprofen tablets, this helped the stiffness. (I must be getting old was my thought!) The stiffness was to my thigh muscles, back of knees, back of neck, waistband, when bending down and sitting on the floor, getting into a bath or car, (not at the same time!) and placing things on the floor or picking things off the floor.

My diagnosis was a hot bath and I would feel better, which I did for a short time. We were back at home from the P/W and the camping was to start in a weeks' time. The stiffness didn't seem to go away only for a little while after the bath. I was still playing squash about 5 times a week, the Ibuprofen tablets seemed to help, but the stiffness soon returned.

Off we went camping to Norfolk. The weather was good, I was not! I felt worse and so stiff. The camping was no problem - it was silly things like getting into and out of the car, bending down to pick things off the floor, tying shoe laces. I could only walk about 2 miles and that was a great effort for me. It was only a couple of years since we were standing on the top of Kilimanjaro! What was wrong? It was ages since I had seen the doctor. My whole body seemed unhappy. So I rang the doctor from the tent for an appointment the day after my return home! We did though finish the camping, just! "So what can I do for you Mr W" the doctor says, I describe my ailment and problem, I had written notes down on paper before I went to the surgery. She listened with interest to my tale of woe.

I think you maybe have Poly......... Hold on, Just let me refer to the Internet she says! Yes, it could be Polymyalgia Rheumatica, (PMR), you need a blood test. So off I go to ASDA for the in- house blood sample/test! Our ASDA store has a small section within the store that takes the sample prior to analysis. I also picked up my bread and milk at the same time!

Back at the Dr's the next day for the results I am given the diagnosis, blood test ESR of 89 and a CRP of 49. Yes, it seemed it was Polymyalgia Rheumatica, PMR.

This was 01 July 2008. The Dr, and also the hospital decided to just use the CRP reading from then on. This has varied from the 49 down to 6 and back up to 16 a couple of months ago. The Dr initially prescribed the following medication.

  • Prednisolone Tablets, Steroids (Daily) 15mg Daily and Enteric Coated, to be reduced to a planned schedule
  • Calcichew-D3 (Daily but not when Alendronic tablets taken)
  • Alendronic Acid Tablets (Weekly)

As I type this up my steroids are down to 5mg per day. I use a daily schedule of exercise, trying to do something each day. I use a diary to show what I have done, I find this to be quite a motivator to do something each day. Weekly I still play squash 4 times. I walk between 5-10 Miles on one day a week, and a new bike has allowed me to cycle. I swim over 1/2 mile each time I visit, this is the best exercise I do for the stiffness, maybe twice a week, and it's FREE now!

I do more exercise than before. I maybe have not had PMR as bad as I know some people have had it, maybe a male thing. I feel I was fortunate with the Dr's early diagnosis. I also visited a Rheumatology Department at the local hospital which confirmed the Dr's diagnosis; a worthwhile second opinion.

I did go down to 5mg of Prednisolone a day after about 5 months but the stiffness returned, (I had maybe dropped too fast) I returned to 7mg of Prednisolone and things improved again, so a slower reduction was the order of the day. So I could go on!

Since diagnosed with PMR we have toured through Guyana and Brazil, up the Amazon all in South America in the last 6 months, and guess what? Correct, we are going camping to Pembrokeshire next month. I hope the weather is hot and sunny, if not it is Greece for a week in July, already booked.

I could have said more, but I can be contacted by email through this site for an email chat. This happened to me when I emailed someone in the N/E Support Group. It was one of my best email searches and was a great success to get first hand direct and honest information from someone who also has/had PMR-GCA. I have also now been co-opted onto the new National PMR-GCA UK committee as Treasurer. Lucky Me!

So be positive. This is a life changing ailment-not, life threatening.
Good Luck. You will be pleased to know that Brenda and I in a couple of weeks are off to complete the Pennine Way, prior to our trip camping to Pembrokeshire!

Alan Yk 

Alan's Steroid Journey

DATE STEROIDS mg CRP Blood Test OTHER POINTS

2008

     
01 July 2008 0 ? Doctors
VISIT 1
02 July 2008 15.0mg 49 Blood Test Doctor
VISIT 2
30 July 2008 15.0mg 8 Doctors
VISIT 3
31 July 2008 10.0mg 6 Hospital
VISIT 4
01 Sept 2008 7.5mg - Doctors
VISIT 5
11 Sept 2008 7.5/5.0mg Alternate Days - South America HOLIDAY!
25 Sept 2008 5.0mg - Return! S America
13 Nov 2008 7.5/5.0mg Alt/Days 16 Doctors
VISIT 6

2009

     
02 Feb 2009 7.0mg 18 Doctors
VISIT 7
01 Apr 2009 6.0mg - -
1 May2009 6.0/5.0mg Alternate Days - -
17 May2009 5.0mg - -
08 Jun 2009 5.0mg 13 Doctors
VISIT 8
10 Aug 2009 6.0mg Back up-to 6.00mg -
17 Aug 2009 6.0mg Stay on this for 3 months 5 OR UNDER FIVE! Doctors
VISIT 9
01 Oct 2009 6.0/5.0mgAlternate Days - -
08 Nov 2009 5.00mg - -
18 Nov 2009 5.00mg 5 OR UNDER FIVE! Doctors
VISIT 10
19 Dec 2009 5.00/3.5mgTues & Sat - -

2010

     
10 Feb 2010

4.5mg

5 OR UNDER FIVE! Doctors
VISIT 11
14 Mar 2010 4.0mg - -
29 April 2010 3.5mg 5 OR UNDER FIVE! Doctors
VISIT 12
01 July 2010 3.0mg - -
21 July 2010 3.0mg 5 OR UNDER FIVE! Doctors
VISIT 13
15 Oct 2010 2.5mg 5 OR UNDER FIVE! Doctors
VISIT 14
17 Nov 2010 2.5/2.0mg Alt days - -

2011

     
14 Jan 2011 2.0mg 5 OR UNDER FIVE! Doctors
VISIT 15
25 Feb 2011 1.5mg Each Day - -
05 March 2011 OK! OK! OK!

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