Success Stories

I'm not sure that you will get many replies to your question as those who have succeeded in reducing the dose to zero and who are in remission, really don't use the site now - they have no need.

I can't answer your question as I am still on steroids after 15 years and will be on them for life.  However, I do have my own 'success' story.

 

Not 100% success yet, but successful for me! I was diagnosed in March 2015 and started at 20mg prednisone. I am down to 3mg and have been reducing .5 every 2-3 weeks, depending on how much activity I have planned. I started the .5 reduction at around 7.5 mg. I take all 3 mg in the morning, and I'm able to play tennis and golf (not every day, but several times a week!) For me, that is success! I hurt going up and down steps and from a seating position, but I attribute that to me gaining 20 lbs and having the excess pressure on my knees. Now if I can lose the weight (down 4 lbs so far), AND get off the pred, that would be the ultimate success story!

Can you please tell me what the word "normal" means, I've forgotten!!????

I have a friend, also in CT, who had active PMR for 8 years.  It finally went into remission. She had been on 5 mg for 8 years and it went away with no rhyme or reason.  She is doing well now.  She went down by 1/2 mg a month as she was getting off it and that seemed to work.  She is also Irish.

Scotth, hopefully I can help to start your week off "right" with a brief story of my journey to remission with both PMR and GCA.

Spent the first 3-4 months of 2006 in agony unable to get out of bed, travelling to rheumy appointments by ambulance and wheelchair.  That rheumy failed to diagnose me.  I took daily small doses of Ibuprofen and Paracetamol but they offered scant, if any, relief.

I battled through, gradually noticing a slight improvement and towards the end of 2006 I spontaneously recovered....or so I thought?  Within a few weeks, the pain started returning together with even worse symptoms, including severe, continuous head pain, jaw pain on chewing, blurrey vision, weight loss, sickness and vomiting.  Over the course of 3-4 weeks, I consulted 3 different GPs and came away with various diagnoses, including an allergic reaction to BP meds and a sickness bug, and various prescriptions.  Finally, a wonderful pharmacist did some research on her computer and mentioned something called Polymyalgia and a sister condition, Temporal Arteritis.  I rang the head of my GP surgery asking him if he thought that what I'd had in my body the previous year could have spread to my head.  He duly diagnosed PMR and GCA and started me on 40mgs Prednisolone, at the same time arranging urgent referral to a rheumatologist.   All the head/jaw pain and the nausea disappeared as if by magic within 3 hours of taking the first 8 pills.  Under the guidance of a brilliant rheumatologist, I was lucky to be able to reduce down from the  high doses to the lower safer doses in textbook fashion, only hitting flares around the 5mg dose.  It wasn't a completely pain-free journey (very few patients are that lucky!).  It was then became a bit of a roller-coaster with pain increasing along with blood test markers, necessitating increasing back up to 10 to stabilise things and very very slowly tapering back down again.  Once back at 5mg again I was kept there for 5-6 months to ensure symptoms had really stabilised before being given the go-ahead to reduce further.  At the time, Ragnar, a Swedish gentleman, posted on this site about the continuous difficulty he had reducing below 5mg.  He decided to try a slow tapering regime where he reduced his dose on just two or three days of the week, returning to his old dose on the other days in between.  He succeeded in tapering in this manner all the way to zero Pred.  I decided to follow his example but only in 0.5mg decrements and only reducing to the new dose on one day of the first week, two of the second, three of the third etc.  I decided to do it this slowly as I feared a further flare like the one I'd experienced earlier.  So slowly but surely, I, too, reached remission and zero Pred in 2012.  I was completely pain-free for a couple of years, but unfortunately blood pressure pills are now taking their toll and producing leg pain when out walking - but fine around the house.  I'm as "normal" as I've ever been!  

 

Hi Scotth

I am the Swedish gentleman that was mentioned in some post. Here i my story.

After a week´s trip to Athens the first week in April 2005, I felt very strange and had a dry cough. After some weeks with blood works and a biopsy in a temple I was told I had pmr but they didn´t tell me I also had GCA, so I heard about that later. 

I was put on 20 mg Prednisone (which is far too low for GCA) and I didn´t get very much information about pmr. Just that it would probably take ½ - 1 year to be free from pmr. I was also told I was lucky to have a disease that would pass in a short time. The next day I flew to the USA to participate in a class reunion after 50 years from graduation as an exchange student in a small town in Minnesota. My wife covered my white bandaid in the temple with skin-coloured surgical tape, so it shouldn´t show so much, especially not on the class picture. After about a week, while travelling in California by rented car, my wife used the scissors of a Swiss army knife to cut the strings that they had sewn at the biopsy. She dipped the scissors in gin from a miniature bottle we had got on the Atlantic flight – to sterilize it. Due to the cortisone, I felt great and on the national day of the USA, 4th of July, we walked downtown without problems. The brochure said the motel was in midtown, near downtown. I think we had to walk 20 blocks and then back – but I felt great (due to the pred) even if my wife got tired despite being in better condition than I. 

I reduced the Pred by 2.5 mg every 3-4 weeks until I reached 10 mg. Then I reduced by 1 mg every month until I reached 5 mg. I tried to reduce below 5 mg during a whole year, but every time I had to go back to 5 mg due to fatigue. I thought it was no idea to go around being tired all the time when I didn´t have to. Unlike most persons with pmr, I had fairly little pain. When I had slight pain, it could be anywhere in legs or arms. After a year, I thought I would test a new regime. I took the lower dose 1 day, the old dose 2 days and repeated this once more. After about a week I took the step and lowered the dose each day. By doing this, my body reacted positively and I could start going down below 5 mg but only about 0.5 mg at a time. I had 2.5 mg tablets and cut them by hand in four parts, so it really was 0.6 mg at a time. If there was a problem, I just continued 1 day low dose, 2 days old dose for another week or so. 

After 3 ½ years – in the middle of December 2008 – I got down to 0 and I haven´t had any problems after that. My belief is that it is better to feel well and take the disadvantages a bit longer, especially when reaching doses of 5 mg and under. I am of course grateful that I haven´t been in pain so badly as most of fellow pmr-sufferers have. To encourage those who are fighting I proposed to start Club Zero some years ago on the Northeast forum and we now have many members.

_________________

Ragnar