I have at last been diagnosed with Polymyositis, having gone privately to the London Neurology Clinic. I am on prednisonal and a tummy lining tablet for the last 2 weeks after 3 months of battling for information as to when or where I would get tests from my Health Authority.
I have type 2 diabetes so at the moment I now have to wait and see how treatment goes, but at least I am now on treatment, not left to deteriorate as has been the situation for 3 months. My sudden loss of mobility has been a heavy blow.
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Campergirl76
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Sorry you are struggling, but it's good you have a diagnosis and started treatment. Hopefully the doctors will monitor you carefully, especially with the diabetes as well. I hope you start to feel better with the medication and also that you can continue to get support through the private clinic. Unfortunately, the NHS does seem incredibly slow to act due to their huge waiting lists and they also seem reluctant to prescribe protective medications like tummy liners.
Dr Patrick Gordon heads the Myositis centre NHS tertiary service at Kings College, you can ask your GP to refer on NHS to oversee your care long term; a patient recently referred patient told advised that his first appointment arrived for 5 weeks away.
Thank you so much for info. I have now managed to get prompt, private help from the London Neurology Clinic and Prof Mike Hanna for which I am so grateful, as my local authority was letting me degenerate. Having had a muscle scan and biopsy, I at last have a diagnosis of Polymyositis and a prescription for Prednisonal which I have been on for 2 weeks. No effects yet, but at least someone is giving me treatment and started medication.
Had my 4th fall of the year with head bang yesterday so an evening at A&E for stitches. I must learn to adapt myself to the changes in my life style with more patience. 🥴
I am sorry that you are going trough such difficult times. I was diagnosed with necrotising myositis back in May this year, I was in hospital for a month and was started on 60mg day of prednisolone. I also have type 2 diabetes, and they were monitoring my blood sugar levels constantly while in hospital because the steroids will increase your sugar levels. The diabetic team increased my medication to try to lower the peaks, and since I was discharged I have been checking my glucose levels regularly at home. It has been a rollercoaster not just with the myositis but also with my diabetes, I am on the the care of the diabetic nurses in the community and they have been brilliant working together with my GP. I do not know which dose of steroids you are, I am currently on 20mg/day, which is still a high dose, and now my blood sugar levels have gone too low, so more diabetes medication adjustments are ongoing. In a nutshell, I would recommend you to liaise with your GP or your diabetic team if you are on a high dose of steroids. Hope you get the treatment that works for you.
Thanks for your information. I was prescribed with 20mg prednisolone for 2 months, 2 weeks ago, with no effect as yet. The Professor said to wait and see and that he could increase the dosage depending how I reacted. So🤞that things will improve….
I decided to change my long-standing GP when I was hospitalised for 3 weeks in September 24, as I decided a fresh pair of eyes which have been been more recently trained, might bring forth results that were not previously forthcoming. So far so good.
During my 3 weeks in hospital under observation I had all sorts of tests including noting my glucose and ck levels which were too high. Glucose has remained variable, ck has dropped a bit, but nowhere near the approved range.
I am now aware that it is important to take control of my glucose levels and at the moment I am checking glucose 4 times a day, particularly as steroids can create spikes.
I have also had an unexpected appointment made for me to see the early-onset arthritis rheumatology consultant. I now realise that when I had my hands examined a year ago as they were beginning to be a bit creaky, it was an early indication of muscle degeneration, which 6 months later resulted in a spread to my legs, arms, neck, shoulders and throat. I had no idea of the connection between my hands and what happened later.
Anyway, my GP, my London Neurologist, my London Myositis expert, local Diabetes Clinic and now Rheumatology are all working together to balance up treatment. Sadly my local Neurologist, or rather his locum, has given me very little help, but hopefully when the new Neurologist is appointed, he will link in with the others.
Also I have had help from the neuro -physios ( but not until 6 weeks after discharge and that only with pushing) and speech and language. I am trying to set up hydrotherapy, but not been able to nail that down yet, but onwards if not upwards!
With my 4th fall and A&E visit in the year yesterday, I have taken note to pace moderately my exercise regime and social events. I still have carers coming in twice a day. I have had 8 decades of excellent health and activity with off-piste skiing (until this spring), camper-vanning in the Antipodes and across Europe, kayaking and walking,
However, should my condition not improve I will have to seek a better home for my dearly loved rescue dog, which is breaking my heart. So I have a lot to strive for.
Hello there! After tests following tests over 4 months, I have now been diagnosed privately with having statin-induced necrositing myopathy ( previously told it was NOT statin-induced). Having had 5 daily sessions intravenous-immuneogloblin and on 30 prednisonal for a month, my CK levels have dropped from 7000 in 9/24 to 860 in 12/24. Once I am under 1000 for a month they can start re-strengthening my muscles. Yeah! What good news.
I will walk and step up again. Perhaps not steady progress but progress thanks to Prof Hanna and my family and friends…..and patience!
HiYou must ask your doctor to put you in touch with a Nurologist be persistant as I was the same started having my myalga in my body like flu in 2019 3 months later put on Predisone and told i had polymyalga which only this year in May was I told I was positive antibody for myositis presumed polymyositis and non of this would have happened if I did not persist-i was passed on to a specialist in myositis in Nov so it has been aong journey
Can I ask how long are you on Predisone for as I struggled to get off them
Hello Carolyn! Thanks for the info. I was diagnosed privately in London as no one locally could tell me when I would get a muscle scan and biopsy. I achieved that 4 weeks ago after 4 months of pushing with no treatment.
I was given a 2 month prescription and have now been on 20mg prednisonal for the last 4 weeks with no improvement, in fact deterioration, but I knew it would take time to get the balance right between pros and cons and me.
I had an unexplained appointment with our local rheumatologist on Tuesday. I thought she would explain how she would function with our Locum Neurologist and my Private London Neurologist and Prof Mike Hanna who has diagnosed Polymyositis and has put me on the prednisonal prescription (+ tummy liner) for 2 months.
I expected her to have read up all the tests and background, but no! She barely knew my name! Same as with my local Neurologist locum.
It is so frustrating. Occupational therapy have to wait for our “Appointment” arrangers; Diabetes, my surgery, the local Neurologist, the local Rheumatologist, and my surgery do not interact with each other or me. No one interacts with my carers or me to give an holistic approach . It is such a waste of money and makes my fatigue even worse!
I was expecting to be reviewed on Tuesday, but that did not happen as she knew nothing about me. She is now going to read up my notes and reports and will get back to me next week … another week after 4 months of being “kicked down the road”!😤
I know steroids may not be the answer, but it is the first thing to try and then up the dosage til we try the next level of treatment if steroids don’t work, so early days yet.
Exasperating though the lack of treatment has been, I am now on a path at least, the only problem is I don’t know where it’s going!
Meant to say iv had the EMG test and this showed up a lot of problems with muscles when the machine goes crackers you know it's not good, this Nurologist also wants another EMG test done so hey ho anything if it helps,I was worried about giving up work as I can't get my pension I'm 64 but it got to a point when I was driving 2000 miles month and coming home in pain mid September started limping Osteoarthritis severe of the knee so that was it I went off ill and work released me last week not upset it was hard and I have 44 yrs NI so done my bit miss the buzz but I felt very ill in the end just walking in the garden is a chore-sorry I'm blabbing on its nice to get it of my chest
Iv got to ask you must have a camper van?
I keep saying that one day we will get one iv got dogs bichon fris that's the dream to go off all around everywhere and enjoy life.
Let me know how you get on but if the steroids don't work ask about the steroid intravenous apparently it works better!
Hello Carolyn! I retired 6 years ago when I was 70 after 47 years of a job I loved.
70th birthday, I heli-skied around the Matterhorn, jumped off onto the Monte Rosa plateau, only woman at Monte Rosa hut and down to Zermatt!😊
Had active life, walking, kayaking and a much loved campervan. Took 5 years to chose it VW LWB T5 elevating roof BTW called “Bertie”!
In 2019 Spent 3 months in Oz with friends and campervanning too. Then got caught in NZ with Covid lock down after I had driven N to S and then S to N in campervan. 7 decades of skiing including March this year. One of first signs of Polymyositis was not being able to step up into my campervan! And now I have to have carers to get me in and out of bed!😬 and getting worse!
But early days and still hope to resume skiing and campervanning…..who knows……Travelled over France and Spain solo campervanning with my 72 kg Newfoundland dog ( now 10 kg Spanish rescue)!
So this condition is a bit of a “bummer”: onwards and upwards though.
Thanks for advice: let’s hope I can beat the bloody “locals” into submission to talk to each other and yes! To me, please!
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