welcome to Myositis in Focus
I have set up this site Myositis in focus to try and give people a chance to learn about this horrible muscle condition. I was diagnosed with Dermatomyositis in April 2011 and spent a long time trying to uncover the facts about Myositis. there are some very good websites on the internet but also a lot of misinformation as well, my aim is to collect the correct information to allow people to learn about this disease and also to find support groups that can help them.
My Journey with Myositis
About Me:
My Name is Frank, and I am a 67 year old male living in the city of Portsmouth on the south coast of the United Kingdom, Previously of good health I started to have trouble swallowing in early November 2010, and by Christmas got to the state where it was almost impossible to swallow any solid,s, I had an Endoscopy where it was said I had a twisted Stomach and I was given a course of Omoprazole for acid reflux, it took a long time to convince my Gp that I needed further investigation and I was sent in April for a Barium Swallow where the Problem was found and I was soon after diagnosed with Dermatomyositis, by this time I had lost a lot of weight, going from 13 stone to 8.5 stone, I was in Queen Alexandra Hospital for a week and then to Southampton General Hospital for 2 weeks before returning to Queen Alexandra for a further week, During that time I had all kinds of scans and Tests and was also on a Gastronazal feeding tube for the 4 weeks. I am now at home and starting to get the medication sorted, my biggest problem was not knowing a lot about Myositis and also trying to unravel the mystery surrounding this rare disease, hence this site.
Update January 9th 2012
It is now 8 months since I was Diagnosed with Dermatomyositis, and a lot has happened in my life these last 8 months. Following my return home from hospital on the 25th of May I have made decent progress with a few steps backwards, just to keep me on my toes. One of the hardest things I fund with this disease is a lack of independence, although, i am getting that back (Slowly). because of the Dysphagia which in my case was part and parcel of this disease,( Although not everybody gets it) was that I have been on a "Puree Diet", and have only just progressed to a soft lumps diet in the two weeks leading up to christmas. At least I could eat a small christmas dinner, I am still on a daily protein shake and also take complan shakes occasionally. so on the eating side I am improving and have put on approx 2.5 stone since leaving hospital. my Medication is going Ok with minimal side effects, I am on 15 mg of Methotrexate weekly on a friday and am down to 10 mg Prednisolone daily ( down from 60 mg daily) my disease is monitored by my GP and also my Neurologist on a regular basis, I also have a dedicated Speech Therapist and also a Dietician. I have a care worker come in daily to wash my face and neck and comb my hair as I still have problems reaching above shoulder height, although my muscles are getting stronger. I also have Raynaud's Phenomenon again this goes along with the Dermatomyositis. will update again later in the year.
Update September 22nd 2012
And so we are halfway through 2012 and things are going along pretty smoothly, since my last update I have had one spell in hospital after I had a dizzy spell while out on my own taking Photographs down at Gunwharf Quays. I had been walking around Gunwharf taking Photographs and all of a sudden came over all Dizzy and ended up on the floor, an ambulance was called ant took me to the QA Hospital and after several tests they detected an irregular heartbeat, so I have now got a reveal heart monitor fitted in my chest to record a continuous ECG, I download the data every 2 to 3 months to the hospital via the Telephone, and there has been no re-occurrence, it was put down to me overdoing things on the day and my heart muscles being weakened by the Myositis.
Apart from that I have since moved from my 3 bedroomed house to a one bedroom ground floor flat as I was finding it difficult to negotiate the stairs, as I have trouble with my right thigh, "Oh the joys of Myositis" anyway that was one of the best decisions I have made as it has made day to day living a lot easier. The Dermatomyositis is behaving itself reasonably well it is the side affects of the medication that is the downfall ie acid Reflux, and the parallel problems that occur ie Fatigue, Raynaud's, etc.
My medication regime is a lot better now as I am still on 15 mg of Methotrexate on a Friday and the 5 g of Folic acid on a Monday but apart from 2 x Calcichew D3 on a daily basis and 30 mg of Lansoprazole daily my Prednisolone is now reduced to 15 mg on Alternate day and when I see my Neurologist on Thursday it will probably be reduced down to 6 mg Daily.
My swallowing is almost back to normal thanks to the work and help by my Speech Therapist Dawn, although there are still some foods I have trouble swallowing and I still need to have plenty of liquid with my food to help it down and since May of 2011 when I came out of hospital after diagnosis I have regained a lot of my lost weight and am now at 12 stone, which is as high as I want to go.
I still have a care worker come in every morning to wash my face and neck and comb my hair as my arm and shoulder muscles are still quite weak so mobility above my shoulders is still a problem, although it is making progress it is a lot slower than I thought it would be.
so we look forward to the rest of the year and hope to carry on making slow but positive progress and I will update again at the end of the year.
Update 23rd December 2015
So here we are two days before Christmas and there has been very little change since my last update in September. I have now been taken of of the Calcichew D3 but the rest are exactly the same My Neurologist decided to keep me on the Prednisolone at 15 mg on alternate days until I see him in March 2013. I am still having monthly blood tests at the Eastney Health centre. These are to check for any Liver and Kidney problems with the Methotrexate, I also have the CK Levels checked a full blood count and white Blood cell checks for anemia and/or Diabetes. all these are due to the medication.
On the swallowing front I am now eating everything that I used to be able to apart from Bread, Beef, Lamb and Pork. I have also started a gluten free diet , so will see if that helps with my digestion I also cook mainly using fresh ingredients.
As far as my eyes are concerned I am still having very slight deterioration in the left eye due to the steroid induced cataracts so I will need to have them retested in the new year.
The Muscles in my upper arm/shoulder are still getting stronger, so will probably not need the morning carers for much longer although my upper leg and thigh muscles are still very weak and painful and still need to be in a wheel chair after about 15 to 20 minutes walking although some days are better than others.
On the digestion front I still have to take a low daily dose of Lactulose as I am still prone to constipation again one of the after effects of more than one of my medications.still better than the alternatives, In November my GP also diagnose Irritable Bowel Symptom (IBS) so have a course of Medication for that so another addition to go along with the others.
With the Raynauds I have not had to many problems during the summer and autumn but had a few problems with the feet and Fingers in a couple of cold spells we have had.
The Erratic heart beats seem to be behaving themselves, I still have the reveal heart monitor fitted in my chest to record the ECG and download it to the cardio department of my local Hospital over the phone via a machine and so far I have had no further problems with the heart, this could be due to the fact that since the beginning of the year I have reduced or discontinued a lot of my Medication.
So that is about it for 2012. I look forward to continuing slow and steady progress in 2013 and will update again early in the New Year.
Update 29th May 2013
It is now 2 years since my Diagnosis of Dermatomyositis. Progress has been slow but steady although as I have been tapering down the Prednisolone I have found that I have more trouble with my leg muscles, mainly in the right leg around the thigh and hip area, but on saying that I can see an improvement with my digestion and am having to depend less on laxatives unless I am taking Co-Codamol for the pain in the legs. My eating swallowing has certainly improved which pleases me, and I am eating a wider variety of food and can certainly see the benefits of a Gluten free diet. So hopefully my improvements will continue.
I am still on 15 mg of Methotrexate on a Friday with 5 mg of Folic acid on a Monday. My Lansoprazole is now taken as 15 mg am and 15 mg pm every day 30 minutes before a meal and My prednisolone is now taken as 10 mg on alternative days so really down on that now although I may have to come back up if the muscle weakness in my legs does not improve, my erratic heart beat has not repeated so that seems to have settled down now. so all in all I am happy with the way it is going, so I will update again in the Autumn.
Update 12th September 2013
It is now 3 months since my last update. I have just had my latest meeting with my Consultant and tomorrow Friday the 13th I am going for my yearly P.F.T. ( Pulmonary Function test. everything is much the same apart from the fact that my digestion has not really improved and the constipation seems to be hanging about so I have now been reduced to adding Fybogel on a daily basis to boost the fibre in my diet. I still cannot manage to eat red meat that easily, and still cannot digest the coarser vegetables like beans, carrot,s sweetcorn etc, my medication is as before so no change there although there are times when I need to up the dosage of Prednisolone if I am having a busy couple of days.
I am spending less time in the wheelchair now unless I am going any distance or out and about shopping for a few hours, one of the reasons for that is that I have purchased a rollator , which allows me to walk further and longer than a walking cane, and also it has a seat so I can sit if required, this has allowed me more freedom to go down to the local park on nice days where I can sit and read my paper .
So as long as my P.F.T is Ok tomorrow it seems that things will carry on as they have been. My neurologist will contact me when he gets the PFT Results to discuss my treatment going forward. so I will update at christmas.
Update 5th April 2015
A lot has happened in the last 18 months.since my last update. The main things Being is that the muscles in my legs and thighs have got a lot weaker and it is now the case that I have had to order a power wheelchair so that I can travel further afield as although I can still access the local shops in the vicinity of my home with my Rolator, the distance I can walk has decreased.
I have also found that my Lungs have got weaker which has affected my Breathing and in Jan/Feb I had a PFT which showed I have a breathing restriction and also a low Gas transfer. Following further CT scans on my chest and lungs and a visit to see a Pulmonary consultant this has been confirmed.
one other setback is that I have now been diagnosed with osteoarthritis in my Right and left Knee, so this is another setback to my mobility and another reason why I have purchased a Power chair.
My last visit with my neurologist went as well as can be expected and I have now totally come off of the prednisolone and am now just on Methotrexate, and Folic acid, along with Lansoprazole for the protection of my stomach due to the stomach being twisted( i.e. a cup and spill stomach) and also Laxido for my ongoing constipation but apart from that I am as fit as a fiddle apart from either Paracetamol or Co-Codomol for pain relief in the legs and shoulders as and when required.
That is the latest update and I will update again as and when any changes in my life with Dermatomyositis happen.
Update 1st July 2015
Since my last update on the 5th of April and the visit with my Neurologist I have had further visits to a cardiologist and also my Pulmonary Consultant.
On Wednesday the 10th June I had my appointment with the Cardiology department for a Echocardiogram, the results of which I received on the 10th June when I had my appointment with my Pulmonary consultant, This was quite a in depth appointment which lasted over 2 hours, in that time I had a Pulmonary function test, followed by a chest X-Ray, after which I saw the consultant, and after a thorough examination had to go to give 5 vials of bloods for testing and also a Urine Sample,
The outcome of all this is that my blood oxygen levels are low but the Echocardiogram and X-Ray show no sign of any disease to the Lungs or the heart, the Heart beat is strong. so it looks as though at this stage my breathing problems are down to weakness to the Lung/heart muscles due to the Myositis, although I have shown early stage Emphysema. also it is possible there is a restriction to the blood flow to my lungs which could explain the low oxygen levels so I have been given an appointment to go for a "Angiogram - Pulmonary" CT scan on the 24th of July to see if that shows up any problems, also I will see my Pulmonary consultant again when all the test results are back in.
And the good news is that after a few holdups with the shipping, my new fold up cruiser 12A Power chair has arrived , It was delivered to me on Monday and after making sure the batteries were fully charged I took it out for a first outing Yesterday, it will take a bit of getting used to, but it will make a huge difference to my ability to get out and about in the city and to the Sea front, the good part about it , is that i can also walk and Push it for a short while ( as I can also disconnect the drive from the wheels with a turn of a lever) which means I can also get exercise as well, but I can also get in and drive once the leg muscles say no. which is something I could not do with my Rollator so was restricted to the distance I could go, as about 20 minutes is all I can manage walking and that is due to the progressive muscle weakness.
Well that is what has/is happening since April, and once I have had the results of the tests and the Angiogram - Pulmonary CT scan I will update again probably in August or September.
Update 25th October 2015
Since my last update not a great deal has happened, I had my Angiogram - Pulmonary CT scan and that did not show up any Problems with the blood flow to the lungs so that was a positive result. and I saw the Respiratory & Thoracic med team on the 8th of October, there was very little change in my breathing problems so I see them again in February when I will have another rCT Scan and Pulmonary Function Test to see if the deterioration is stable, there was one concern about the acid reflux affecting the lungs so II have had to increase my daily Lansoprazole from 15mg twice a day to 30mg Twice a day and that has helped with the reflux..
The next problem that has appeared is that when I went for my annual eye test it was discovered that the pressure was high in my left eye so the optician wrote to my GP asking them to refer me to the Ophthalmology department for an assessment , after a vision test and eye test, they measured the lens in the eye and did more pressure tests and it was decided that the 4 years that I was on Prednisolone when I was Diagnosed with the Dermatomyositis has induced cataracts in both eyes, but the left eye is worse and also it has made me susceptible to Glaucoma so I was referred back to the clinic on the 18th October for a pr-op assessment .
I attended the Ophthalmology clinics on the 18th October for the pre op assessment and I am going to have the lens in my left eye removed and replaced with a smaller one, that will increase the space within the eye and reduce the pressure. The operation is under local Anaesthetic and will take about 20 minutes, this procedure is scheduled for the 12th November and after 6 weeks I go for a check up and as long as all is OK then they will schedule an op for the right eye for sometime in January.
Well that is about as exciting as it gets, the muscle weakness in the legs and thighs is still deteriorating although thankfully at a slow rate but also I have noticed that my grip with my hands is a lot weaker so that is making things like opening jars harder, so it looks like a shopping list is needed to purchase some disability aids to help with that.
I am getting out and about a bit more now that I have my power wheelchair, so that is pleasing although I still do two daily walks out with my rollator (weather permitting) as i need to walk to get the exercise and also to help to keep the weight down, I have also resumed cooking the majority of my meals using fresh produce so that also keeps me busy throughout the day and I am now enjoying tasty home made Gluten Free Meals .
Update 11th February 2016
And here we are now in February and I am glad to say that at the moment I am in a reasonably stable period with the Myositis, Although the leg muscles have got slightly weaker I am still managing to get out with my Rollator for short walks around the block or around the town centre, but for longer trips to the park /sea front or local shopping precinct I need to use the Power wheelchair as the Osteoarthritis which was brought on by the prednisolone is playing havoc with my knees in this cold winter weather.
Well as I said in my last update I was scheduled for my Cataract removal from my left eye on the 12th November, well I am glad to say that went OK and I am scheduled to have the cataract removed from my right eye tomorrow, Friday 12th February, and hopefully it will all go smoothly like the left one did. I am looking forward to having better vision, again the cataracts were induced by the use of High dosage prednisolone.
In September 2012 I was fitted with a reveal heart monitor in my chest to record my heartbeat due to periods of feinting due to erratic heart beats, I used to down load the results to the Cardio Unit of the local hospital over the Telephone line every three months, well as my Myositis started to be stabilised so periods of erratic heart beats started to diminish and I am now waiting on an appointment to go to the Cardio department to have the monitor removed. as i have had no sign of an erratic heart beat over the past 12 months.
The problems with the grip in my hands, especially my right hand seems to be getting worse and I have a couple of periods where I have dropped a cup of coffee and a couple of other things so that is being looked at, apart from that things seem to be going along at a steady pace.
I am waiting on my next appointment to see my pulmonary consultant for my next Pulmonary Function Test (PFT).
As far as the recurring UrinaryTract Infection (UTI) is concerned at the moment it seems to be behaving itself. I went for a Renal Ultrasound in December and the bladder and kidneys are ok and no problems with the bladder emptying , in fact rather the opposite as the incontinence is still rife, so having to use protective pads when I leave the house. but that does not curtail me from going out. so am now waiting on an appointment with the Urology department for further investigation.
I also seem to be having a harder time with the Raynaud's this winter especially in my toes and also having a recurring Nasal infection but have prescription ointment for that, as Raynaud's also affects the Nose and ears as well as hands and feet.
Well that is about it until the next update so I hope you all have a good Valentines day and Easter. so cheerio until the next update.
Update 23 September 2016
Where has the year gone, It is now approaching the end of September and a few things have happened since my last update in February. I have still been coping with the recurring UTI, on the 22nd April I had an appointment with the Urology Team at the Queen Alexandra hospital in Portsmouth where I had a ultrasound of the Bladder and kidneys, and then Had a camera inserted into the bladder ( was that a painful experience) anyway as the Dr said while he was doing it No problem s in the bladder apart from a "bit of Debrie floating around, he then carried out a rectal Examination on the prostate and said no problem but it is enlarged so I am now on "Tamsulosin" once a day which has reduced the urge to urinate as often.
On the 28th of June I had an appointment with the Cardiology department at the QA Hospital. which went well although the ECG did show some "Non Conducted Ectopy" but no other problems with the rhythm and follow up visit is planned.
On the 7th July I had a Pulmonary Function test at the QA Hospital which showed a slight progression in the decrease in the oxygen levels but not to bad.
On the 18th July I had a follow up appointment with the Urology team and I carry on with the Tamsulosin, but still no nearer finding out why I keep getting the recurring UTI.
on the 12th August I had the appointment with the cardiology Day unit to have the Reveal Heart monitor removed from my chest, This sent haywire and I ended up with a massive bleed and was admitted overnight with a pressure dressing applied and released the next day with a large "HaematomaI" in the chest muscle, as it was so near to the heart they could not remove it so it was left to disperse on its own account and I was on a course of Clarithromycin antibiotic,s. Thankfully this has now almost cleared.
on the 2nd september I had a rheumatology Appointment and on the 22nd I had my appointment with my Neurologist. It was a good appointment, there is further progression with muscle weakness in my arms and Legs, affecting my Mobility and also a slight deterioration in my breathing. the muscle weakness is more to my left side. But my Neurologist is pleased that the progression is still slow, so am staying with the 15mg Methotrexate weekly. and he will see me in a years time unless anything changes.
So there we are up to date so will update again towards the end of the year.
My Name is Frank, and I am a 67 year old male living in the city of Portsmouth on the south coast of the United Kingdom, Previously of good health I started to have trouble swallowing in early November 2010, and by Christmas got to the state where it was almost impossible to swallow any solid,s, I had an Endoscopy where it was said I had a twisted Stomach and I was given a course of Omoprazole for acid reflux, it took a long time to convince my Gp that I needed further investigation and I was sent in April for a Barium Swallow where the Problem was found and I was soon after diagnosed with Dermatomyositis, by this time I had lost a lot of weight, going from 13 stone to 8.5 stone, I was in Queen Alexandra Hospital for a week and then to Southampton General Hospital for 2 weeks before returning to Queen Alexandra for a further week, During that time I had all kinds of scans and Tests and was also on a Gastronazal feeding tube for the 4 weeks. I am now at home and starting to get the medication sorted, my biggest problem was not knowing a lot about Myositis and also trying to unravel the mystery surrounding this rare disease, hence this site.
Update January 9th 2012
It is now 8 months since I was Diagnosed with Dermatomyositis, and a lot has happened in my life these last 8 months. Following my return home from hospital on the 25th of May I have made decent progress with a few steps backwards, just to keep me on my toes. One of the hardest things I fund with this disease is a lack of independence, although, i am getting that back (Slowly). because of the Dysphagia which in my case was part and parcel of this disease,( Although not everybody gets it) was that I have been on a "Puree Diet", and have only just progressed to a soft lumps diet in the two weeks leading up to christmas. At least I could eat a small christmas dinner, I am still on a daily protein shake and also take complan shakes occasionally. so on the eating side I am improving and have put on approx 2.5 stone since leaving hospital. my Medication is going Ok with minimal side effects, I am on 15 mg of Methotrexate weekly on a friday and am down to 10 mg Prednisolone daily ( down from 60 mg daily) my disease is monitored by my GP and also my Neurologist on a regular basis, I also have a dedicated Speech Therapist and also a Dietician. I have a care worker come in daily to wash my face and neck and comb my hair as I still have problems reaching above shoulder height, although my muscles are getting stronger. I also have Raynaud's Phenomenon again this goes along with the Dermatomyositis. will update again later in the year.
Update September 22nd 2012
And so we are halfway through 2012 and things are going along pretty smoothly, since my last update I have had one spell in hospital after I had a dizzy spell while out on my own taking Photographs down at Gunwharf Quays. I had been walking around Gunwharf taking Photographs and all of a sudden came over all Dizzy and ended up on the floor, an ambulance was called ant took me to the QA Hospital and after several tests they detected an irregular heartbeat, so I have now got a reveal heart monitor fitted in my chest to record a continuous ECG, I download the data every 2 to 3 months to the hospital via the Telephone, and there has been no re-occurrence, it was put down to me overdoing things on the day and my heart muscles being weakened by the Myositis.
Apart from that I have since moved from my 3 bedroomed house to a one bedroom ground floor flat as I was finding it difficult to negotiate the stairs, as I have trouble with my right thigh, "Oh the joys of Myositis" anyway that was one of the best decisions I have made as it has made day to day living a lot easier. The Dermatomyositis is behaving itself reasonably well it is the side affects of the medication that is the downfall ie acid Reflux, and the parallel problems that occur ie Fatigue, Raynaud's, etc.
My medication regime is a lot better now as I am still on 15 mg of Methotrexate on a Friday and the 5 g of Folic acid on a Monday but apart from 2 x Calcichew D3 on a daily basis and 30 mg of Lansoprazole daily my Prednisolone is now reduced to 15 mg on Alternate day and when I see my Neurologist on Thursday it will probably be reduced down to 6 mg Daily.
My swallowing is almost back to normal thanks to the work and help by my Speech Therapist Dawn, although there are still some foods I have trouble swallowing and I still need to have plenty of liquid with my food to help it down and since May of 2011 when I came out of hospital after diagnosis I have regained a lot of my lost weight and am now at 12 stone, which is as high as I want to go.
I still have a care worker come in every morning to wash my face and neck and comb my hair as my arm and shoulder muscles are still quite weak so mobility above my shoulders is still a problem, although it is making progress it is a lot slower than I thought it would be.
so we look forward to the rest of the year and hope to carry on making slow but positive progress and I will update again at the end of the year.
Update 23rd December 2015
So here we are two days before Christmas and there has been very little change since my last update in September. I have now been taken of of the Calcichew D3 but the rest are exactly the same My Neurologist decided to keep me on the Prednisolone at 15 mg on alternate days until I see him in March 2013. I am still having monthly blood tests at the Eastney Health centre. These are to check for any Liver and Kidney problems with the Methotrexate, I also have the CK Levels checked a full blood count and white Blood cell checks for anemia and/or Diabetes. all these are due to the medication.
On the swallowing front I am now eating everything that I used to be able to apart from Bread, Beef, Lamb and Pork. I have also started a gluten free diet , so will see if that helps with my digestion I also cook mainly using fresh ingredients.
As far as my eyes are concerned I am still having very slight deterioration in the left eye due to the steroid induced cataracts so I will need to have them retested in the new year.
The Muscles in my upper arm/shoulder are still getting stronger, so will probably not need the morning carers for much longer although my upper leg and thigh muscles are still very weak and painful and still need to be in a wheel chair after about 15 to 20 minutes walking although some days are better than others.
On the digestion front I still have to take a low daily dose of Lactulose as I am still prone to constipation again one of the after effects of more than one of my medications.still better than the alternatives, In November my GP also diagnose Irritable Bowel Symptom (IBS) so have a course of Medication for that so another addition to go along with the others.
With the Raynauds I have not had to many problems during the summer and autumn but had a few problems with the feet and Fingers in a couple of cold spells we have had.
The Erratic heart beats seem to be behaving themselves, I still have the reveal heart monitor fitted in my chest to record the ECG and download it to the cardio department of my local Hospital over the phone via a machine and so far I have had no further problems with the heart, this could be due to the fact that since the beginning of the year I have reduced or discontinued a lot of my Medication.
So that is about it for 2012. I look forward to continuing slow and steady progress in 2013 and will update again early in the New Year.
Update 29th May 2013
It is now 2 years since my Diagnosis of Dermatomyositis. Progress has been slow but steady although as I have been tapering down the Prednisolone I have found that I have more trouble with my leg muscles, mainly in the right leg around the thigh and hip area, but on saying that I can see an improvement with my digestion and am having to depend less on laxatives unless I am taking Co-Codamol for the pain in the legs. My eating swallowing has certainly improved which pleases me, and I am eating a wider variety of food and can certainly see the benefits of a Gluten free diet. So hopefully my improvements will continue.
I am still on 15 mg of Methotrexate on a Friday with 5 mg of Folic acid on a Monday. My Lansoprazole is now taken as 15 mg am and 15 mg pm every day 30 minutes before a meal and My prednisolone is now taken as 10 mg on alternative days so really down on that now although I may have to come back up if the muscle weakness in my legs does not improve, my erratic heart beat has not repeated so that seems to have settled down now. so all in all I am happy with the way it is going, so I will update again in the Autumn.
Update 12th September 2013
It is now 3 months since my last update. I have just had my latest meeting with my Consultant and tomorrow Friday the 13th I am going for my yearly P.F.T. ( Pulmonary Function test. everything is much the same apart from the fact that my digestion has not really improved and the constipation seems to be hanging about so I have now been reduced to adding Fybogel on a daily basis to boost the fibre in my diet. I still cannot manage to eat red meat that easily, and still cannot digest the coarser vegetables like beans, carrot,s sweetcorn etc, my medication is as before so no change there although there are times when I need to up the dosage of Prednisolone if I am having a busy couple of days.
I am spending less time in the wheelchair now unless I am going any distance or out and about shopping for a few hours, one of the reasons for that is that I have purchased a rollator , which allows me to walk further and longer than a walking cane, and also it has a seat so I can sit if required, this has allowed me more freedom to go down to the local park on nice days where I can sit and read my paper .
So as long as my P.F.T is Ok tomorrow it seems that things will carry on as they have been. My neurologist will contact me when he gets the PFT Results to discuss my treatment going forward. so I will update at christmas.
Update 5th April 2015
A lot has happened in the last 18 months.since my last update. The main things Being is that the muscles in my legs and thighs have got a lot weaker and it is now the case that I have had to order a power wheelchair so that I can travel further afield as although I can still access the local shops in the vicinity of my home with my Rolator, the distance I can walk has decreased.
I have also found that my Lungs have got weaker which has affected my Breathing and in Jan/Feb I had a PFT which showed I have a breathing restriction and also a low Gas transfer. Following further CT scans on my chest and lungs and a visit to see a Pulmonary consultant this has been confirmed.
one other setback is that I have now been diagnosed with osteoarthritis in my Right and left Knee, so this is another setback to my mobility and another reason why I have purchased a Power chair.
My last visit with my neurologist went as well as can be expected and I have now totally come off of the prednisolone and am now just on Methotrexate, and Folic acid, along with Lansoprazole for the protection of my stomach due to the stomach being twisted( i.e. a cup and spill stomach) and also Laxido for my ongoing constipation but apart from that I am as fit as a fiddle apart from either Paracetamol or Co-Codomol for pain relief in the legs and shoulders as and when required.
That is the latest update and I will update again as and when any changes in my life with Dermatomyositis happen.
Update 1st July 2015
Since my last update on the 5th of April and the visit with my Neurologist I have had further visits to a cardiologist and also my Pulmonary Consultant.
On Wednesday the 10th June I had my appointment with the Cardiology department for a Echocardiogram, the results of which I received on the 10th June when I had my appointment with my Pulmonary consultant, This was quite a in depth appointment which lasted over 2 hours, in that time I had a Pulmonary function test, followed by a chest X-Ray, after which I saw the consultant, and after a thorough examination had to go to give 5 vials of bloods for testing and also a Urine Sample,
The outcome of all this is that my blood oxygen levels are low but the Echocardiogram and X-Ray show no sign of any disease to the Lungs or the heart, the Heart beat is strong. so it looks as though at this stage my breathing problems are down to weakness to the Lung/heart muscles due to the Myositis, although I have shown early stage Emphysema. also it is possible there is a restriction to the blood flow to my lungs which could explain the low oxygen levels so I have been given an appointment to go for a "Angiogram - Pulmonary" CT scan on the 24th of July to see if that shows up any problems, also I will see my Pulmonary consultant again when all the test results are back in.
And the good news is that after a few holdups with the shipping, my new fold up cruiser 12A Power chair has arrived , It was delivered to me on Monday and after making sure the batteries were fully charged I took it out for a first outing Yesterday, it will take a bit of getting used to, but it will make a huge difference to my ability to get out and about in the city and to the Sea front, the good part about it , is that i can also walk and Push it for a short while ( as I can also disconnect the drive from the wheels with a turn of a lever) which means I can also get exercise as well, but I can also get in and drive once the leg muscles say no. which is something I could not do with my Rollator so was restricted to the distance I could go, as about 20 minutes is all I can manage walking and that is due to the progressive muscle weakness.
Well that is what has/is happening since April, and once I have had the results of the tests and the Angiogram - Pulmonary CT scan I will update again probably in August or September.
Update 25th October 2015
Since my last update not a great deal has happened, I had my Angiogram - Pulmonary CT scan and that did not show up any Problems with the blood flow to the lungs so that was a positive result. and I saw the Respiratory & Thoracic med team on the 8th of October, there was very little change in my breathing problems so I see them again in February when I will have another rCT Scan and Pulmonary Function Test to see if the deterioration is stable, there was one concern about the acid reflux affecting the lungs so II have had to increase my daily Lansoprazole from 15mg twice a day to 30mg Twice a day and that has helped with the reflux..
The next problem that has appeared is that when I went for my annual eye test it was discovered that the pressure was high in my left eye so the optician wrote to my GP asking them to refer me to the Ophthalmology department for an assessment , after a vision test and eye test, they measured the lens in the eye and did more pressure tests and it was decided that the 4 years that I was on Prednisolone when I was Diagnosed with the Dermatomyositis has induced cataracts in both eyes, but the left eye is worse and also it has made me susceptible to Glaucoma so I was referred back to the clinic on the 18th October for a pr-op assessment .
I attended the Ophthalmology clinics on the 18th October for the pre op assessment and I am going to have the lens in my left eye removed and replaced with a smaller one, that will increase the space within the eye and reduce the pressure. The operation is under local Anaesthetic and will take about 20 minutes, this procedure is scheduled for the 12th November and after 6 weeks I go for a check up and as long as all is OK then they will schedule an op for the right eye for sometime in January.
Well that is about as exciting as it gets, the muscle weakness in the legs and thighs is still deteriorating although thankfully at a slow rate but also I have noticed that my grip with my hands is a lot weaker so that is making things like opening jars harder, so it looks like a shopping list is needed to purchase some disability aids to help with that.
I am getting out and about a bit more now that I have my power wheelchair, so that is pleasing although I still do two daily walks out with my rollator (weather permitting) as i need to walk to get the exercise and also to help to keep the weight down, I have also resumed cooking the majority of my meals using fresh produce so that also keeps me busy throughout the day and I am now enjoying tasty home made Gluten Free Meals .
Update 11th February 2016
And here we are now in February and I am glad to say that at the moment I am in a reasonably stable period with the Myositis, Although the leg muscles have got slightly weaker I am still managing to get out with my Rollator for short walks around the block or around the town centre, but for longer trips to the park /sea front or local shopping precinct I need to use the Power wheelchair as the Osteoarthritis which was brought on by the prednisolone is playing havoc with my knees in this cold winter weather.
Well as I said in my last update I was scheduled for my Cataract removal from my left eye on the 12th November, well I am glad to say that went OK and I am scheduled to have the cataract removed from my right eye tomorrow, Friday 12th February, and hopefully it will all go smoothly like the left one did. I am looking forward to having better vision, again the cataracts were induced by the use of High dosage prednisolone.
In September 2012 I was fitted with a reveal heart monitor in my chest to record my heartbeat due to periods of feinting due to erratic heart beats, I used to down load the results to the Cardio Unit of the local hospital over the Telephone line every three months, well as my Myositis started to be stabilised so periods of erratic heart beats started to diminish and I am now waiting on an appointment to go to the Cardio department to have the monitor removed. as i have had no sign of an erratic heart beat over the past 12 months.
The problems with the grip in my hands, especially my right hand seems to be getting worse and I have a couple of periods where I have dropped a cup of coffee and a couple of other things so that is being looked at, apart from that things seem to be going along at a steady pace.
I am waiting on my next appointment to see my pulmonary consultant for my next Pulmonary Function Test (PFT).
As far as the recurring UrinaryTract Infection (UTI) is concerned at the moment it seems to be behaving itself. I went for a Renal Ultrasound in December and the bladder and kidneys are ok and no problems with the bladder emptying , in fact rather the opposite as the incontinence is still rife, so having to use protective pads when I leave the house. but that does not curtail me from going out. so am now waiting on an appointment with the Urology department for further investigation.
I also seem to be having a harder time with the Raynaud's this winter especially in my toes and also having a recurring Nasal infection but have prescription ointment for that, as Raynaud's also affects the Nose and ears as well as hands and feet.
Well that is about it until the next update so I hope you all have a good Valentines day and Easter. so cheerio until the next update.
Update 23 September 2016
Where has the year gone, It is now approaching the end of September and a few things have happened since my last update in February. I have still been coping with the recurring UTI, on the 22nd April I had an appointment with the Urology Team at the Queen Alexandra hospital in Portsmouth where I had a ultrasound of the Bladder and kidneys, and then Had a camera inserted into the bladder ( was that a painful experience) anyway as the Dr said while he was doing it No problem s in the bladder apart from a "bit of Debrie floating around, he then carried out a rectal Examination on the prostate and said no problem but it is enlarged so I am now on "Tamsulosin" once a day which has reduced the urge to urinate as often.
On the 28th of June I had an appointment with the Cardiology department at the QA Hospital. which went well although the ECG did show some "Non Conducted Ectopy" but no other problems with the rhythm and follow up visit is planned.
On the 7th July I had a Pulmonary Function test at the QA Hospital which showed a slight progression in the decrease in the oxygen levels but not to bad.
On the 18th July I had a follow up appointment with the Urology team and I carry on with the Tamsulosin, but still no nearer finding out why I keep getting the recurring UTI.
on the 12th August I had the appointment with the cardiology Day unit to have the Reveal Heart monitor removed from my chest, This sent haywire and I ended up with a massive bleed and was admitted overnight with a pressure dressing applied and released the next day with a large "HaematomaI" in the chest muscle, as it was so near to the heart they could not remove it so it was left to disperse on its own account and I was on a course of Clarithromycin antibiotic,s. Thankfully this has now almost cleared.
on the 2nd september I had a rheumatology Appointment and on the 22nd I had my appointment with my Neurologist. It was a good appointment, there is further progression with muscle weakness in my arms and Legs, affecting my Mobility and also a slight deterioration in my breathing. the muscle weakness is more to my left side. But my Neurologist is pleased that the progression is still slow, so am staying with the 15mg Methotrexate weekly. and he will see me in a years time unless anything changes.
So there we are up to date so will update again towards the end of the year.
What is Myositis :
Myositis is a general term meaning Inflammation of the Muscle,s and includes the Following :
Polymyositis:
Dermatomyositis:
Juvenile Dermatomyositis:
Inclusion Body Myositis:
The 4 Diseases listed above are known and referred to as Inflammatory Myopathies, these cause Inflammation within the Muscle and also cause Muscle damage.
Polymyositis, Dermatomyositis and Juvenile Dermatomyositis are all classed as Autoimmune diseases. This in effect means that the body,s immune system is attacking the Muscle. It is also true that the immune system may also cause Muscle damage in Inclusion Body Myositis, this may not be the cause of this disease.
.
Symptoms :
Symptoms of Myositis can Include the Following :
Trouble rising from a chair:
Difficulty climbing stairs:
Difficulty lifting arms:
Feeling tired after standing and walking:
Trouble swallowing:
Trouble Breathing:
Muscle pain and soreness:
Myositis is a general term meaning Inflammation of the Muscle,s and includes the Following :
Polymyositis:
Dermatomyositis:
Juvenile Dermatomyositis:
Inclusion Body Myositis:
The 4 Diseases listed above are known and referred to as Inflammatory Myopathies, these cause Inflammation within the Muscle and also cause Muscle damage.
Polymyositis, Dermatomyositis and Juvenile Dermatomyositis are all classed as Autoimmune diseases. This in effect means that the body,s immune system is attacking the Muscle. It is also true that the immune system may also cause Muscle damage in Inclusion Body Myositis, this may not be the cause of this disease.
.
Symptoms :
Symptoms of Myositis can Include the Following :
Trouble rising from a chair:
Difficulty climbing stairs:
Difficulty lifting arms:
Feeling tired after standing and walking:
Trouble swallowing:
Trouble Breathing:
Muscle pain and soreness:
Title Photograph:
the photograph in the title was taken by me in 2010, and is a view looking across the entrance of Portsmouth harbour from the round tower to Gosport.
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the photograph in the title was taken by me in 2010, and is a view looking across the entrance of Portsmouth harbour from the round tower to Gosport.
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