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29 January 2018
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My Story

Lyn's story

HERE BEGINS MY STORY OF PMR OR IS IT?
By Lyn Member of PMR-GCA UK North East Support)

July 2009 saw me already packed and raring to go for a long weekend Country Music Festival in Barnard Castle. Sadly that did not happen, nor did anything else for quite some time.

I developed Swine Flu and it certainly was a “swine”.

Having been re-assured that it was not a serious form of flu and that I should begin to feel better after about 5 days. I put my head down and kept taking the Paracetamol!! But- 10 days later we had to send for the out of hour’s doctor as I was worse not better. He diagnosed a deep chest infection and prescribed a course of Amoxicillin.

Though August and September I improved but still felt very tired. Then in October I developed a further viral illness which made me feel very tired, shivery, I was constantly sweating and I had a vile taste in my mouth.

My GP organized endless blood tests over the following weeks all of which showed persistently elevated CRP and ESR. Christmas was cancelled. I had lost almost a stone in weight and was very weak.

On the 3rd of February 2010 I saw a consultant physician – this was the start of more tests. It began with a chest X ray, then a CT Scan of my chest and abdomen. The only thing which showed up was a hiatus hernia which I didn’t know I had. I was having drenching nightly sweats and spells of intense shivering along with a much raised temperature. Eventually in March I was told I had PVO PUO ( pyrexia of unknown origin ie an elevated temperature with no explanation).

Still with a high CRP and ESR which was above 120 I had a White Cell Scan and was briefly radio-active! Again nothing untoward showed up and an echocardiogram was also normal. The consultant said that I was the healthiest very unwell person he had ever seen!!!

The next step was to the Haematology department which resulted in a bone marrow biopsy. This worried me as I realized they were looking for a lymphoma. However, true to form all results were normal – PHEW.

It was now October 2010 - and I was referred to the Department of Infection and Tropical Medicine. My blood results were still high; I was mega tired, still having night sweats although not as frequent.

November 2010 – The powers that be diagnosed P.M.R I had no unusual pain, just a few aches and pains one would expect at 70 plus.

Then it all began – yes, the steroids and the “bone protection”. I had never heard of a Dexa Scan or Alendronic Acid, I was not offered a Dexa Scan or told much about the medication. Had I felt a bit more “with it” I might have asked but!!!!

I was started on 60mg of steroid for 2 weeks. I had a Temporal Artery Biopsy one week after starting steroids. I continued to have monthly appointments at the Department of Infection and Tropical Medicine.

I had all the usual side effects from the steroids, moon face, facial hair growth, weight gain you name it I had it.

The Alendronic Acid was fierce – I was dizzy, very unsteady, had awful palpitations, I would not take it if I knew I had to drive the car that day, I knew I wasn’t safe. Since taking Alendronic Acid from November 2010 I have had more dental treatment, yes approximately £600 plus worth than in the past 10 years. One extraction and various fillings and re-builds, not because the filling came out, they stayed mostly in place, the teeth just gave way. I am still having dental treatment to this day.

I was desperate to stop this drug, but both consultants and G.P were adamant that I stay on it – again I was not offered a Dexa Scan.

It wasn’t until October of 2011 when I saw AT LAST a rheumatologist that a Dexa Scan was offered and a different diagnosis – i.e. connective tissue disease!!!

The outcome of the Dexa Scan – NORMAL – no more Alendronic Acid.

The Connective Tissue Disease is treat steroids the same as P.M.R.

My Rheumatologist put me on a steroid reduction management programme to get me from 60mg to 12mg which I managed reasonably well. Then I was up and down from 12.mg to 5mg and back again, the thoughts at that time were that what I was feeling was steroid withdrawal symptoms rather than the “problem” I had.

Things are going fine now, I am to reduce steroids by .5 a month with the help of Leflunomide, and I am down to 5.5 prednisolone daily.

I am so grateful to the PMR-GCA UK North East support team for giving me the courage to ask my GP for a referral to the QE. Remember Margaret how reluctant I was? In actual fact I was not aware that I could choose which hospital I went to until you told me. I am also so grateful to the wonderful team at the Queen Elizabeth Rheumatology Department. With help from both of them I have hope and I can now see light at the end of the tunnel.

I don’t have PMR as was first thought, but I won’t stop going to the North East Group meetings as I know they will always be there to help me to come through this illness and are supporting me throughout this treatment.

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