Myositis Stories

Wayne Parnell’s story:


In February of 2019, while doing a routine checkup on my liver (due to all the meds I take), it was discovered that I was in the beginning stages of liver disease. Due to the volume and type of meds I take for my Antisynthetase, we did not feel it was unusual, and decided we would just continue to monitor. I was on a 1-year recall checkup schedule at that time, and we decided to continue with that schedule.

 

When I went for my yearly liver checkup in Feb 2020, it included an elastography, to make sure everything was still ok. This time, between the blood tests and the elastography, it showed that in the past year, I had gone from stage 1 to stage 4. At that rate, my liver would not hold out for a whole lot longer. My Doctor and I discussed the issue, and she knew that getting rid of medication was not a viable option. She said the only thing that might help my liver from getting worse would be a drastic change in diet. She said she did not expect me to do it all at once, but I should try to do as much as I could.

 

The new diet was as follows:

1. No added sugar

2. No simple carbs (which included potatoes, rice, white bread, etc.)

3. No fried foods

4. No added salt

5. No alcohol

 

Well, I have never been a drinker, but the rest!? I figured just shoot me now, because there is no point in living anymore. 

 

When I left the doctor’s office, I was feeling somewhat down, between the news of my liver condition and the only possible way of prolonging my life. I had decided in my mind though, that since I had always told my family that I would always fight, that I would follow the diet to the best of my ability and see how it went. My next appointment was in 3 months - surely I could do it until then.

 

I immediately cut out everything requested. I switched from soda to diet soda or sparkling water. No more potatoes, or rice, and only whole grain bread. I started eating more vegetables and salads. I watched what meats I was eating and made sure they were lean, and more moderate portions.

That was a Thursday. On the Sunday following, just a couple of days later, I went through a full withdrawal of the sugar. I felt horrible, and really Ill. My granddaughter, a nurse, was staying with us, was so concerned she wanted me to go to the ER. I decided to just stay home and spend the day in bed in the hopes whatever I was feeling would go away.

 

I found out after when talking to a doctor that sugar withdrawal can be just like drug withdrawal; it seems I was having DT’s, (detox).

 

Although it was difficult, partly from missing many of the foods I was used to eating, and partly due to getting used to salads and a more limited diet, I managed to stick to it. Each week that went by it got easier. I got used to the different foods and found many alternatives.

 

On my next appointment, looking at my blood tests and elastography, my specialist was doing nothing but smiling. I was asked point blank “how did I get my liver back to stage one?”  When I told her that I followed her instructions and cut out the foods she told me to, she was shocked. “No one ever does what I tell them to,” was her reaction. I did not expect such a drastic turn around. I was very happy about it though. Because of that change, it was an easy decision for me to continue with eating that way. 

 

There was a second part to this journey: Shortly after starting this new “diet”, I was also changed from methotrexate to cyclophosphamide, in hopes that it would also help with the liver damage. Well, after only 13 days, this new medication had almost destroyed my kidneys. A lucky timing on routine bloodwork showed the damage, and I was able to stop taking the new medication before it was too late. Because of this though, I had to stay off any new immunosuppression medication to allow my body to detox. This scared me, as my symptoms had always flared with even a small modification of my meds. Amazingly though, without the added immunosuppression I was still holding very well. In fact, I was feeling much better than I had in a long time.

 

It is now 2021 and my liver has continued to stay healthy, and the liver disease has not progressed past stage one, and I am feeling so much better, and have still not added back that immunosuppression medication that I could not survive without before.

 

I have continued to stick to my diet, although I do allow myself little cheats on special occasions. A small piece of birthday cake, a small spoon of mashed potatoes and gravy at Christmas, etc. I think that by having a better daily regimen made all the difference…

 

This is no longer a diet, but a lifestyle change that has made a world of difference!

“I’m Elaine Dicken – a 62-year-old woman with Inclusion Body Myositis.  I received a diagnosis in September 2014, but feel that I had struggled for 8 or 9 years prior to my diagnosis.  I thought it was a left knee and right hip issue.  I had been hyperextending the left knee more & more which put pressure on the right leg and hip.” 

“I was seen by orthopedic doctors who after x-rays just kept saying there was no need for knee or hip replacement surgeries.  In the spring of 2014 I went back to my family doctor and said this has to be figured out.  It was getting worse – I was falling more often, stairs were becoming harder to climb; I looked for curb cut-outs, and I was losing strength.  When I fell, I could not get up.  I had x-rays and MRI’s done on my spine and brain which eliminated other possibilities.” 

“To save time, I paid to attend a private spine clinic and was examined by a neurologist.  He did the electrical impulse testing and suggested that it was IBM.  He said a muscle biopsy was required to confirm the diagnosis, and I was referred to the South Calgary Hospital Neurology Dept.  The muscle biopsy was done, but the results were inconclusive because they could not get enough muscle tissue from my left arm.  In the spring of 2015 a blood test was done, sent to St Louis, Mo. and it was concluded that I had IBM.” 

“Upon learning of the IBM diagnosis, the neurologist advised there was no drug available that would help and the disease would progress.  He could not tell me how quickly it would progress, but said eventually I would require a wheelchair and daily living assistance.  I was told that exercise seems to be helpful, but no recommendation as to what exercises, how often, or how intensive exercise should be.”

“I was lucky, my family doctor had another patient with the same diagnosis who was willing to be contacted.  That individual put me in touch with a support group in Calgary and through him, I involved myself with Myositis Canada.  At the first support group meeting I went to, I was given the brochure for the Patient’s Myositis Conference to be held in Orlando, Florida in September 2015 sponsored by The Myositis Association based in the US.  Very worthwhile attending.”

“I had always enjoyed yoga, but never practiced regularly.  At my winter home in Arizona I met a yoga teacher who was very good at adapting poses for my needs.  I have a routine that takes about 20-25 minutes which I aim to do 3-4 times a week or more.  A month after starting yoga on a regular basis, I could get up on my own – it’s not graceful, but I can do it.  I fell in August 2015 and badly sprained my ankle, but I was able to get up by myself that night.  However, I hobbled around for a few weeks and during that time,  lost even more strength in my legs which I have not been able to regain.  It also scared me and I’m super cautious about walking by myself.  I now use a cane whenever I leave my home.”

“I am still golfing two or three times a week, but can no longer participate in tournaments.  I cannot step in and out of a sand trap.  Sand is unstable, and it’s too easy for my ankle to turn over and down I would go.  But golfing gets me outside and I can keep in touch with friends.  I’m losing my ability to grip a club with my left hand and fatigue is becoming a factor, I’m not sure how much longer I’ll be able to play.  An occupational therapist used webbing to construct a contraption that I can wrap around my hand and the club which may allow me to continue to golf on a fun basis.”

“I live in a one floor condo apartment which has a walk-in shower and the only step I have to negotiate is to my patio.  I can foresee a need to have a ramp made for that doorway.  A fellow IBMer in Ontario has a metal fold up ramp which I intend to look for.  I spend the winters in Arizona – no snow or ice – and a fold up ramp could be useful on the trip down and back.” 

“Since my diagnosis of IBM, I have gathered a lot of information about myositis.  The discovery of the antibody that the blood test confirmed shows that the research being conducted in the US is progressing.  I am involved in a study being conducted in Calgary, but essentially it’s just gathering information from myositis patients.  I fill out a monthly questionnaire online and will do an annual physical test.  Will it lead to a future drug study?” 

“I am hopeful that the efforts put forward by Myositis Canada will raise awareness across Canada.  It is my hope that in raising awareness and fundraising, Myositis Canada can inspire and fund researchers to study and develop treatments to cure or control myositis causes and effects.”

“I have had polymyositis since 2002.  It was categorized as acute polymyositis when first diagnosed.  Because I had trouble putting a box back on a shelf where I had to push it above my shoulders, I made an appointment with my family doctor.  He asked me to lift my arms above my head which I did with great difficulty.  He referred me to a neurologist who did blood work and an EMG. It took a few visits before I was diagnosed, during which time I could feel my legs and grip become weaker and I had difficulty getting up from the floor.  I was given a prescription for prednisone.  Within six months I returned to my normal strength.”

“Three years later, I noticed I had difficulty lifting my arms above my shoulders.  I made an appointment with my family doctor who referred me to the same neurologist I’d seen before.  Only blood work was done at that time.  The neurologist recommended a muscle biopsy to confirm that the diagnosis three years ago was correct.  I was referred to a surgeon who would do the biopsy at the hospital.”

“While waiting, I was not put on any medication and I continued to get weaker.  My legs were affected, and it became more difficult to walk. I had difficulty getting up from a seated position, my grip became weaker and my neck became very sore and weak.”

 “Because I continued to weaken while waiting for the muscle biopsy, my dad researched other specialists. This led to receiving a referral to McMaster’s Neuromuscular Disease Clinic. I received an EMG, muscle biopsy and blood work during my first appointment, and given a prescription for prednisone and booked in for IVIG treatments.  Unfortunately, since waiting for close to two months with no medication before my referral to McMaster, I continued to decline.  I reached the point where I could not walk and had difficulty swallowing and ended up using a wheelchair.”

 “A month and a half after my first appointment at McMaster, I was admitted to hospital.  Because of swallowing difficulties, I lost a lot of weight and was dehydrated. I had a feeding tube put in to get nutrients.  I was also given Imuran which my body did not tolerate so ended up taking Methotrexate.  My specialist also gave me a small dose of Synthroid.  I continued to take prednisone as well and had the IVIG treatments.”

“I was in hospitals either at McMaster or hospitals closer to home for about three months, during which time I had aspiration pneumonia twice.  When well enough to go home, I attended physiotherapy as an outpatient at a rehab facility.  At first, I was using a wheelchair, then a walker and lastly a cane.  I was eventually able to walk without the aid of a cane.”

“It took a year and a half before I was well enough to return to work.  I started part-time then increased to full-time until I had to go back to part-time again.  During this period I had flare-ups, and my specialist added a new medication – CellCept.  During flare-ups, I also receive IVIG.  Close to two years ago I had another flare-up and I got a bit weaker.  My specialist increased the prednisone dose, and it stopped any further decline.  However, I was no longer able to work after this.”

 “After returning home from the hospital, I always felt fatigued but was able to manage it.  This time I fatigued easier and did not have as much energy.  I noticed that my walking had really slowed down, and it was harder to climb stairs.  It was an adjustment for me. I have always been a person with lots of energy. After recovering from being in hospital, it seemed to come back.  However, now I need to really pay attention to what I am doing, and make sure I get lots of rest.  I also move slower so it takes me longer to do things.  When I compare how I am now to when I was in the hospital, I am grateful I can still walk.”

“My husband has moved things in the house to make it easy to reach what I need.  I am not able to lift much so he has to carry things for me.  I am currently on five medications: prednisone, Methotrexate, Folate (the day after I take Methotrexate), Synthroid and CellCept.”

 “We have light weights and an elliptical in our house.  I also go to Tai Chi classes twice a week.  After exercising, I need to rest as it tires me out.  But I realize how important it is to continue exercising so that I can make sure I do not decline any further.”

“Since being diagnosed with polymyositis, it has really made me more in touch with my body and I realize the importance of exercise, proper sleep and healthy eating.  I definitely appreciate my health more.  Even though I am weaker and cannot do a lot of things, at least I can move.”

 “Looking forward to the future, my main hope is to keep myself as mobile as possible.  I realize that as I age I will have age-related muscle loss, and because I already have weak muscles, I really need to exercise and keep moving as much as I can.”