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My Story

Margaret W (updated April 2017)

I was diagnosed with Polymyalgia Rheumatica in May 2006.

Born in 1948.  A grandmother who before I was diagnosed with PMR at 57 had a very active life walking 6 miles a day, swimming 20 lengths 3 times a week, abseiling, sailing and lots of other 'stuff' as well. Then in December 2005 I suffered a slight stroke, and at my review in January my consultant put me on Aspirin, a blood pressure lowering tablet and Simvastatin to lower my cholesterol. He warned me that Simvastatin could cause muscle problems and if I suffered from muscle pain to come off the Simvastatin and consult my doctor immediately. If I woke up one morning and found I could hardly walk for the muscle pain to contact the hospital for an immediate appointment or go to casualty as something could be done to reverse the problem.

But it didn’t quite happen like that. After about 4 weeks I noticed my neck was becoming stiff, so I changed my pillows but it did not good. By March I found my shoulders and back was aching. I stopped the Simvastatin and consulted my doctor who told me it was not the Simvastatin and to continue taking it. By April I was getting worse. Then one morning in May I could not get out of bed for the horrendous pain in my whole body. I initially thought I had pulled all the muscles putting the new loft ladders back into place. Then it dawned on me it could be from the Simvastatin so I stopped taking it and went to my doctors. But it was too late.

He immediately diagnosed me with PMR, and wanted to start me on 20mg of steroids but the fear of the steroids won and I refused to take them. I spent the next 4 weeks seeing an osteopath until one day he said he could do no more for me, he was perplexed and suggested I saw someone who treat muscle disorders.

I went back to the doctors and he took blood tests, my ESR rate was 120 he was so shocked he sent me for more tests just in case I had something more serious. These were thankfully showed nothing sinister and I succumbed to the steroids. I started on 20 mgs a day and within 24 hours I bounced out of bed like a spring chicken. I though this was the answer, little did I realize what was in the future for me.

I hated the moon face, the peach fuzz and the weight gain. Although the moon face soon went down as my steroids went down. The `spare tire` is still there though. The weight moves around and I have gone up two sizes at the top but down two sizes at the bottom - not bad I suppose.

Over the next few months I came down 2.5 mgs every month until the September when I went to America. I was told the time difference would not matter and to take the steroids at breakfast time just the same. That 8 hours difference wiped me out for 5 days; I was in a horrendous state, could hardly walk and suddenly had a really bad bout of depression. (Another side effect of rapid steroid reduction I’m told) It ruined my holidays; it was another lesson to be learned.

Over the following two years, I was left to manage my steroids myself with little support, I floundered on many occasions. Then I asked to see a consultant rheumatologist to see what support I could get. This was even worse, I was told to `hike` them up if I was bad and drop them down if I felt better. The worse advice I could have been given. I went privately and after a review my insurance company refused to pay his fees and told me to look for someone else, but who. For the following year I was on a roller coaster not knowing where I was going or what I was doing. Bad days were more often than good.

Then one day my daughter brought in a magazine she had picked up from her doctors surgery. It told about Professor Dasgupta and his research into PMR and GCA. So I wrote to him offering my body and soul for his research. He soon replied with the telephone number of a lady called Mavis Smith who lived not far from me in Kibblesworth Tyne and Wear. She was trying to set up a support group. Mavis has GCA.

That one telephone call changed my life dramatically. She explained she could not give me medical advice but could support me in many other ways; she invited me over for a coffee so we could talk in more depth. She recommended a good rheumatologist and I took her advice and got my doctor to write to him.

My new rheumatologist was wonderful, sympathetic and understanding. He put on a steroid reduction programme which worked fantastically and I was down to 2.5mg and feeling great.

Unfortunately, In August 2008 I suffered another mild stroke, the tablets they put me on caused major problems. At first I thought it was my PMR flaring up again and upped my steroids until my Rheumatologist realized that my problems were related to the drugs not the PMR. I have had to go back up on my steroids to level things out and have agreed to try Methotrexate. So watch this space and I will let you know what happens.

I have helped Mavis and Pamela another PMR suffer to set up PMR-GCA UK North East Support Group and we as a team are going from strength to strength.

The best move during these three years has been to meet people like Mavis and Pamela and others like them who channel their disabilities into positive energy and help others. The best advice I can give anyone from personal experience is don’t go it alone, join a support group.

August 2010

A YEAR ON METHOTREXATE

I had been taking Simvastatin for about 6 weeks when I started getting muscle pain, but my doctor insisted I kept on taking it to avoid another stroke. I blame the Simvastatin for my PMR and this is why I have a fear of taking any more drugs.

Needless to say reluctantly Steroids were the only answer to treating my PMR and hence after a roller coaster of 3 years on steroids being given both good and bad advice the thought of taking Methotrexate struck the fear of God into me.

It was in May 2009 that my wonderful Rheumatologist suggested that I try Methotrexate as he felt that some of my symptoms were from long term steroid use rather than the PMR.

I freaked, there was no way I was going to stuff any more drugs down my throat, nothing was going to change my mind. He arranged for me to speak to a specialist Rheumatology Nurse and reluctantly I went, but even with all her encouragement I still stood firm, I had heard you lost your hair, developed mouth users and felt sickly all the time, worse still couldn’t drink alcohol, what! Not a cat in hells chance.

Then by chance at a family wedding I noticed my Daughter in Laws sister who suffered from Rheumatoid arthritis and her aunt of 72, were bopping on the dance floor like ‘good uns’.

Our conversation lead to treatment and the fact they were on Methotrexate. Their words were very encouraging.

Yes your hair could go thinner but a weekly tablet of folic acid prevented it and in fact your hair condition improved,

Yes you did feel a little sickly but by taking your Methotrexate once a week and at night just before you went to bed helped and Lansoprazole each morning prevented it, you could get ulcers but neither of them had suffered it., and if you were sensible you could have the odd glass of wine or so.

And the best thing – it helped you get off steroids and your weight improved. I was sold.

So cap in hand I went back to my Rheumatologist and after a lung function test I started at the end of May 2009 on a single dose of 10mg of Methotrexate once a week on a Friday night and one dose of 5mg Folic Acid once a week on a Wednesday night.

He instructed my GP to take blood tests every two weeks for the lst six weeks then every month after that and gave me a book to record the results in. The nurse at my GP practice fills in the book when the blood tests come back and I collect it so I can keep an eye on it myself. He then put me on a steroid reduction programme of .5mg on the lst of every month.

Yes I had one or two problems, I had to stop my Methotrexate on the odd occasion as I had to take antibiotics for a urine infection until my Doctor found one which I could take without stopping the Methotrexate.

Slowly but surely I came down off my steroids, with few problems until I got to about 1.5mg. I found my joints were very painful and I struggled to get out of bed in the mornings but within an hour it went off, but as the dosage dropped my joints became worse. I also developed Carpel Tunnel type symptoms in my hands.

My Rheumatologist explained this was all from the steroid withdrawal and not the Methotrexate.

April 2010 he increased the Methotrexate to 15mg and by lst of June I was steroid free but not without the painful joints.

I last saw my Rheumatologist at the beginning of August, 2010 having been steroid free for 8 weeks and I felt so much better, had lost a couple of pounds and it was lovely only taking my drugs once a week instead of being bound by the daily routine of the steroids. He increased the Methotrexate to 20mg and the folic Acid to 5mg twice a week and as I was no longer on steroids he prescribed Naproxen for the joint pain. He fitted me with splints for my hands to help with the Carpel Tunnel type symptoms, (although I could have had an injection to help I decided that the splints would suit me better) He did re-assure me that as time went by and my body got used to being synthetic steroid free the joint pain would ease. I know this is true as my daughter had the same problem some years ago after taking large doses of steroid for 7 months.

I am not out of the woods yet, I still have PMR. It has gone in the upper half of my body but I still have it in the calves of my legs. I find the Methotrexate treatment is so much friendlier. I rarely feel sickly; I have the best head of hair I have ever had and never experienced mouth ulcers so far (touch wood). All I would say to those who are contemplating Methotrexate, give it a try, its worth it, you don’t have any of the nasty problems steroids give you, its lovely not to have any of those dark days you get when you take a steroid drop. Your Rheumatologist will give you a book for recording your monthly blood its very important that you do not miss these blood checks as it helps your doctor to pick up any problems,. I hope in another 12 months I am thinking as positively as I am now.

One thing to remember, Methotrexate does not cure PMR, nothing does currently, and it is a steroid sparing agent with less damaging effects than the steroids.

If you are thinking of giving it a go Good Luck

 February 2015

 I just don’t know where the years have gone and my story needs updating.

 Well, I’m still on Methotrexate and its working for me.  It doesn’t cure PMR it just keeps it at bay, dampened down, If I miss it one  week it catches up with me about two weeks later and I start feeling that stiffness again although no where near what it used to be.  The claudication (stiffness) in the calves of my legs has totally gone.  I don’t know whether it has just burned itself out or because I am back to swimming and walking again. 

I had a few tummy troubles and one doctor prescribed Lansoprazole again.  Strange my muscles started to ache and I thought it was my PMR.  We had a locum doctor and I went to see her.  She told me to come off the Lansoprazole straight away as it caused muscle pain and could cause PMR.  I googled it Drugs.com and there it was under information for medical profession, yes it said it could cause PMR.

APRIL 2016

Another year on.  I’m had a slight hic up last year and just by chance mentioned it to my Rheumatologist, I thought my Methotrexate had stopped working and I was stiff and aching again.  He thought my body might not be absorbing the Methotrexate as it should and to split the dosage, half in the morning and half at night. Bingo it worked and I am back to normal (well as good as normal gets).  Something so simple yet what a huge difference it made.  I haven’t had claudication in my legs for about 6 months now and stride out when walking. Weight has come down by another stone and a half with a little help from “Simmers World”.  Long may this last.

Stay positive, there are lots going on out there in research to find a cause and cure.  Keep talking to others with PMR and GCA its amazing the good advice you get and if you can go to a support group or join one as a out of area members.  Each and every one of them is just golden.  One day with a fair wind a cure will be found

Margaret Wright (last updated 3rd April 2016)

April 2017
 
Well I'm still going, nothing has changed since my last update in April 2016.  Taking my Methotrexate half in the morning and half at night is still working.  My days are good now and I forget I have PMR (actually its Complex PMR that means it will never go away) Occasionally, especially if I have done to much it reminds me its lurking in the background. On the whole I really can't complain.
 

Stay positive, there are lots going on out there in research to find a cause and cure.  One day with a fair wind a cure will be found

Margaret Wright
Project Co-coordinator
PMR-GCA UK North East Support.

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