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Tapering the Prednisolone.

One of the things that I am having trouble getting to grips with is the tapering of the Prednisolone. Why is it that although I know that when I am on one of the tapering cycles I have a distinct lack of energy until my body starts to compensate. I still tend to  overdo things.

When I first started to Taper down I was on 60 mg a day and was tapering by 10 mg a time but as my dosage decreased so the amount by which I tapered by was reduced until at a dose 20 mg a day I tapered at 2 mg a day  every 2 weeks over a period of  10 weeks until I reached  10 mg a day. this was held until May this year when I had my 3 monthly appointment with my Consultant.

At that appointment he talked about tapering the Prednisolone again to a point where I would be taking a 15 mg dose every other day, so I am tapering now on a dose of 3 mg / 15 mg on alternate days for 4 weeks and then on to 1 mg/15 mg alternate days for 4 weeks and then onto 0 mg/15 mg Alternate days until I see him in september.

Well it is not going to badly but what I am finding is that on the days after taking the 3 mg dose I am very short of energy whereas on the days after I take the 15 mg dose I have a lot more energy, hopefully after 2 0r 3 weeks the body will adjust to the difference in the doses.

I have to be careful that I plan my shopping trips around the dosage otherwise I find that I overdo things and end up suffering for a day or two after with sore muscles and fatique, but I know that it will be worth it in the end just to hopefully be able to come of the  Prednisolone.

 
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Posted by on June 15, 2012 in Uncategorized

 

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Raynaud’s with Myositis

One of the underlying problems I have contracted with the Dermatomyositis is that I now have Raynaud’s Phenomenon. this is a very painful experience and have found it can last between 30 minutes and several hours, it mainly effects the fingers and the toes but in some cases can affect the nose and the ears. The Following Paragraph is taken from the Oxford Journals of Rheumatology.

Taken from the Oxford Journals of Rheumatology

Polymyositis and dermatomyositis are chronic inflammatory muscle diseases characterized clinically by muscle weakness and fatigue, and histopathologically by inflammatory cell infiltrates in skeletal muscle. Extramuscular involvement is common, such as the skin in dermatomyositis, interstitial lung disease (ILD), arthritis, gastrointestinal involvement and Raynaud’s phenomenon, suggesting that myositis is a systemic inflammatory connective tissue disease 

In the worst scenario that I have found when it happens to me is that my fingers get very cold and  turn white then turning to blue and are very painful they then turn purple and eventually go back to normal. This condition is caused by the reduced blood flow to the extremities of the blood vessels.

The same thing happens to my toes as well, I have had a word with my doctor about this and she said that the main triggers for this is change in temperature or stress can bring it on but I would suspect other things could trigger it, with me it is the change in temperature that seems to bring it on, for instance last night I was sat watching TV when all of a sudden it affected the toes on my left foot, I ended up with two pairs of socks on that foot and all so  wrapped it in a blanket, that warmed it up and after about 45 minutes it returned to normal, my right foot and hands were not affected at all.

The best advice my doctor gave me and it works for me is to wear pure wool socks and gloves if the weather is cold, as they are more thermal than synthetic material. the other thing i find that works for me is to use “Hotties” hand and Toe warmers, these are cheap and very effective on keeping your hand and toes warm, they are extremely cheap to by and in the UK I get them online from JJB Sports but they are readily available on ebay.

 
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Posted by on April 22, 2012 in Uncategorized

 

Coping with Dysphagia

Having Chronic Dysphagia and being on a Nasal feeding tube in hospital for 4 weeks at the diagnosis of Dermatomyositis was not the best of experiences but coming off of the feed tube and having to sample the delights of puree food was another experience all on its own.

To say “Hospital Puree food” is an experience is an understatement, it is Bland, Tasteless, full of un-identifiable produce, and cold. anyway after a week in hospital on that I was glad to get home into my own environment. but now it was time to assess the situation, living on my own I was responsible for my own catering, this was in May 2011.

I started my meal regime by using soft food for breakfast ie soft cereal with plenty of milk like “Porridge” and “Wheatabix” always having a large glass of water handy to help with the swallowing, the main meals for lunch and supper were purchased from a catering company and delivered frozen on a weekly basis ready to cook straight from the freezer. Although these were better than the hospital meals they were (1) not that appetizing and (2) Expensive, so I decided that I would invest in a hand blender and puree my own food, that way I could choose what I wanted to eat, and also I would know exactly what I was eating.

Well this is where you adapt to the “Situation” I found that I was experimenting with various food item using fresh food and ready meals, I steamed all my fresh vegetables and pureed them down, also Chicken and Pork pureed down quite well, as did fish and Pasta, I discovered that I was, with the exception of “red meat” basically eating the food that I was eating before only pureed to a consistency that was easy to swallow.

going down this route gave me the nutrition that I needed and apart from the fact that things like bread, red meat,s, cake  was a “no go” the only inconvenience was the amount of extra washing up, as I progressed throughout the year so I was able with the  swallowing exercises from the Speech Therapist and advice from the dietician able to improve the swallowing to a point in November 2011 ( 6 months after coming out of hospital) that I was advanced onto a “soft lumps diet” which I am still on, my swallowing has improved 100% and although I still cannot swallow “red meat” I can now eat most things including Bread and Cake. I still need to have a glass of water with me at mealtimes and always have to take small bites and chew well but am improving all the time.

This time last year I was on a feeding tube, 5 months ago I was on a puree diet, now I am on a soft lumps diet, In 6 months time I hope to be able to eat and swallow a KFC.

 
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Posted by on April 20, 2012 in Dysphagia

 

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Franks journey with Dermatomyositis

Symptoms

It was at the end of August in 2010 that I noticed that my ability to whistle a tune was diminishing, I gave no thought to it at that time but as september passed  and we entered October I was starting to have difficulty swallowing harder food stuff such as Meat, Bread, etc. I was also starting to have bouts of “Wind” and feeling bloated, I made an appointment with the doctor who said it was nothing to worry about and sent me away with a prescription for “Gaviscon” however the Swallowing got progressively worse and in November the doctor decided to send me for an “Endoscopy”. The outcome of this was that they diagnosed a “Twisted stomach” cup and spill stomach and prescribed Omeprazole  for “Acid Reflux” however although this helped with the Indigestion which in fact was “Acid Reflux’ it did not improve the swallowing and in January 2011 I was diagnosed by my doctor as having “Dysphagia” and referred to the hospital for a “Barium Swallow”.  at this time I had lost a lot of weight. The appointment was towards the end of February and  that was what I was waiting for.

On the day of the Barium Swallow I attended the Hospital and the doctors started the test within 10 minutes she stopped the test and said she could see what the problem, she could see a problem with the second swallow in the Esophagus  and that I would be given an appointment to see a Neurologist, and I was told to go home and my GP would be in touch. Within 2 hours of arriving home my GP contacted me and I was given an appointment with a Neurologist within 4 weeks, during the following week I was staying at my sons house when I was admitted to hospital with Breathing problems.

Diagnosis

In the hospital in Portsmouth UK I was seen by a Neurologist who looked at the rash on the back of my hand,s and ordered an EMG test, and I was also put on a Nasal feed tube as my weight had dropped from 13.5 stone to 8.5 stone. after a week at the QA Hospital in Portsmouth I was transferred to the Southampton Hospital where I had a Muscle Biopsy along with a Cat Scan, Pet Scan, Deep Body Scan, Heart Echo Scan and Pulmonary function Test. The diagnosis at that time was Dermatomyositis with Chronic Dysphagia. I was started on 60 mg of Prednisolone per day and stayed at Southampton for two weeks and then transferred back to QA Hospital at portsmouth. I was discharged back home on the 25th May 2011 and had a care package in place as I live on my own.

Back home

once back home I was visited by the District nurse , and had a Hospital profile bed installed and my family arranged the house so that I could live on the ground floor, as I could not climb the stairs, I also had limited mobility in my arms and could not lift my hand above my shoulders so I have a carer come in every morning to wash my face and neck, and comb my hair. I see a Dietician and a Speech therapist on a regular basis and when I came home from Hospital I was on a puree diet until November 2011 and am now on a Soft lumps diet. My Medication now is 10 mg Prednisolone a day and 15 mg Methotrexate a week on a friday, also folic acid and Calcium tablets and vitamin D. I still have some difficulty walking for more than 20 min,s before my leg muscles get tired and my arm mobility is much better but still need the carer in the morning. I am lucky in that I have a good  friends to take me shopping with the wheelchair and my family visit me weekly and I go to my sons twice a week, one problem I do have is that they have detected irregular heartbeats due to the heart muscles being weakened by the Myositis so have a Reveal heart monitor fitted, and i still suffer from Acid Reflux and take Lansoprazole for that.

My thoughts

I feel that I am lucky in as much as I did not get this disease until I was 67 years old and is probably one of the reasons that my muscles are still very weak, It took a long time to come to terms with the fact that I have to rely on Family and Friends to help me but I have now accepted that as a part of my new life for the foreseeable future. I think my sense of humour has helped a lot and I write my weekly blog journal with humour also I have a Myositis website which I hope will help people, so although I did not Visualize this for my retirement, I have to accept that it has happened and get on and enjoy retirement.

 
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Posted by on April 18, 2012 in Uncategorized

 

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