Polymyositis

[NickTarn]

I am a type 2 Diabetic, I was managing my condition with Metformine and Forxiga and was put on Atorvastatin by my GP and Cardiologist ( I did a stress ECG and they reported a Systolic depression, I was advised to see a Cardiologist, I did this and he did an Angiogram which showed my arteries to be clear, the stress ECG was a false positive (apparently 30-40% are)). The Cardiologist and my GP put me on a Statin anyway, the GP saying he would like the see everyone over 55 should be on a Statin.

In early 2017 I noticed getting up, walking up and downstairs was getting harder and I fell over twice, I am 61 and I just thought that it was a result of getting older. Talking to medical friends and reading an article in New Scientist I decided to stop the statin, I did this for a month but did not see any difference so I started the Statin again.

On a regular GP, Diabetis appointment , I mentioned this to my French GP (we moved to France a couple of years ago) and he ordered another blood test on my regular tests, CPK Creatine Phosphokinase. I had the test which should be in the range 10-120 mcg/l my results were over 5000!!!!

The GP surgery called as soon as they received the results, (by email the same day from the medical lab, in France) and told me to stop taking the Statin. More CPK blood tests and the results stayed high, so probably not the Statins, a Consultants appointment and a MRI scan and Biopsy it turns out I have a rare condidion called Polymyositis, where the immune system attacks the bodys main muscles.

Now for the question, as a first line treatment, I have been put on Prednisone (Cortisone), which can cause type 2 Diabetis, as I already had this I was put on insuline at the same time. The Polymyositis is getting in control, with the aid of other drugs, Methotrexate and Immunoglobulin infusions and they are starting to reduce the Cortisone. Does anyone know if I can get down to a low Cortisone dose (the aim of the Polymyositis regime) Will I be able to go back to pre insuline drugs or is it more likely that I will be on insuline for the rest of my life.?

I had been exercising regularly and loosing weight, maintaining reasonably good blood sugars with the pills, but had expected that eventually I might need to be on insuline. One result of all of this is that, I had a fear of injecting my self with insuline, based on observing my grandfather in the 1960's, I now know that insuline pens are very easy and present no problems for me.

 

[Resurgam]

I was taking Atorvastatin and Metformin - I stopped taking both of them well over a year ago as I was so ill. It took some time to get back to walking normally again - I was in such a state that my husband decided to stop taking statins. He is a lot nicer these days - he was a right pain before.

 

[DCUKMod]

I am a type 2 Diabetic, I was managing my condition with Metformine and Forxiga and was put on Atorvastatin by my GP and Cardiologist ( I did a stress ECG and they reported a Systolic depression, I was advised to see a Cardiologist, I did this and he did an Angiogram which showed my arteries to be clear, the stress ECG was a false positive (apparently 30-40% are)). The Cardiologist and my GP put me on a Statin anyway, the GP saying he would like the see everyone over 55 should be on a Statin.

In early 2017 I noticed getting up, walking up and downstairs was getting harder and I fell over twice, I am 61 and I just thought that it was a result of getting older. Talking to medical friends and reading an article in New Scientist I decided to stop the statin, I did this for a month but did not see any difference so I started the Statin again.

On a regular GP, Diabetis appointment , I mentioned this to my French GP (we moved to France a couple of years ago) and he ordered another blood test on my regular tests, CPK Creatine Phosphokinase. I had the test which should be in the range 10-120 mcg/l my results were over 5000!!!!

The GP surgery called as soon as they received the results, (by email the same day from the medical lab, in France) and told me to stop taking the Statin. More CPK blood tests and the results stayed high, so probably not the Statins, a Consultants appointment and a MRI scan and Biopsy it turns out I have a rare condidion called Polymyositis, where the immune system attacks the bodys main muscles.

Now for the question, as a first line treatment, I have been put on Prednisone (Cortisone), which can cause type 2 Diabetis, as I already had this I was put on insuline at the same time. The Polymyositis is getting in control, with the aid of other drugs, Methotrexate and Immunoglobulin infusions and they are starting to reduce the Cortisone. Does anyone know if I can get down to a low Cortisone dose (the aim of the Polymyositis regime) Will I be able to go back to pre insuline drugs or is it more likely that I will be on insuline for the rest of my life.?

I had been exercising regularly and loosing weight, maintaining reasonably good blood sugars with the pills, but had expected that eventually I might need to be on insuline. One result of all of this is that, I had a fear of injecting my self with insuline, based on observing my grandfather in the 1960's, I now know that insuline pens are very easy and present no problems for me.

Hi there,NickTarn, and welcome to the forum. I must admit I had to look up the polymyositis as I wasn't familiar with it.

Nobody here can tell you whether or not you will be able to get off your insulin, there are so many factors in play, and of course we are all just plain old different to one another.

We have had members in the past come off insulin, and some who have also been able to move away from Methotrexate too, but I don't recall anyone with the same condition as you.

What sort of diet have you been following? You mention you have been losing weight (and a big well done if you wanted to lose weight), but you haven't talked too much about what you've been eating. How we eat and drink is such a powerful tool in the T2 arsenal.

 

[NickTarn]

Hi all thank you for your responses, I was also on Atorvastatin and seemed to tolerate it well, I read about the muscle problems side effects and at first assumed it was the statin? Especially after reading the New Scientist article.

Polymyositis is quite a rare condition with between 1-10 sufferers per 100,000 but I though this might raise awareness. As I understand it from the immunologist, she at first tried a high Cortisone dose 80 mg per day (it would have been higher but could not as I was already type 2 Diabetic) as my CPK did not come down quickly she added Methotraxate ( a chemotherapy drug) and three days each month on immunoglobulin drip ( an interesting one this, I though that this should boost my immune system, turn out I was right but apparently they do not know why it works but by boosting the immune system with added immune cells it can knock back my own immne sysem which is attacking my own muscles). Hopefully with the CPK levels back to normal I can keep the Polymyostisis in remission with a low 10mg Cortisone dose.

I was not following a particular diet but living in the South of France we do eat a mainly mediterainian type diet and had generally upped our exercise regime.

My ACTH (I think this is Cortisol Plasmatique in French) was 5.9 which was low as they give a normal value of 6.2 to 18 for miday when I have the blood test. I am not sure I understand why ACTH is measured?

Glad to hear that some memembers had come off insulin so there is hope there, especially if I can up my exercise (physio is also good for restoring lost muscle due to the Polymyostisis). We have just been skiing last month so still managing to do some sports although it was a lot gentler than we used to do, also that made my sugars low (about 56 or I Think 2.8 on the UK scale)

Many thanks to this forum it is great living in France and the French healthcare system seem very good (although A&E) on a Sunday night after one fall was comparable to the UK, a three hour wait and then an hour to clean the wound and put in six stitches. To be seen by the immunology consultant one day after the GP requested and having the MRI and Biopsy a month after that seems incredible by UK standards. However it is good to be able to talk in English about the Diabetes and further understand the results of the numerous blood tests.

Thanks Nick

 

[Boo1979]

Hi all thank you for your responses, I was also on Atorvastatin and seemed to tolerate it well, I read about the muscle problems side effects and at first assumed it was the statin? Especially after reading the New Scientist article.

Polymyositis is quite a rare condition with between 1-10 sufferers per 100,000 but I though this might raise awareness. As I understand it from the immunologist, she at first tried a high Cortisone dose 80 mg per day (it would have been higher but could not as I was already type 2 Diabetic) as my CPK did not come down quickly she added Methotraxate ( a chemotherapy drug) and three days each month on immunoglobulin drip ( an interesting one this, I though that this should boost my immune system, turn out I was right but apparently they do not know why it works but by boosting the immune system with added immune cells it can knock back my own immne sysem which is attacking my own muscles). Hopefully with the CPK levels back to normal I can keep the Polymyostisis in remission with a low 10mg Cortisone dose.

I was not following a particular diet but living in the South of France we do eat a mainly mediterainian type diet and had generally upped our exercise regime.

My ACTH (I think this is Cortisol Plasmatique in French) was 5.9 which was low as they give a normal value of 6.2 to 18 for miday when I have the blood test. I am not sure I understand why ACTH is measured?

Glad to hear that some memembers had come off insulin so there is hope there, especially if I can up my exercise (physio is also good for restoring lost muscle due to the Polymyostisis). We have just been skiing last month so still managing to do some sports although it was a lot gentler than we used to do, also that made my sugars low (about 56 or I Think 2.8 on the UK scale)

Many thanks to this forum it is great living in France and the French healthcare system seem very good (although A&E) on a Sunday night after one fall was comparable to the UK, a three hour wait and then an hour to clean the wound and put in six stitches. To be seen by the immunology consultant one day after the GP requested and having the MRI and Biopsy a month after that seems incredible by UK standards. However it is good to be able to talk in English about the Diabetes and further understand the results of the numerous blood tests.

Thanks Nick

Ive nothing particularly helpful to add re the wider issues but I feel your pain and your relief at the lowered CPK level - I had a massive adverse reaction to one of the new generation antibiotics (Cipro) which gave me a CPK level of 54,000 - the consultant said it should be under 100. I’ve never felt pain anything like it before or since and never want to see anyone else enduring high CPK levels

 

[LittleGreyCat]

I was taking Atorvastatin and Metformin - I stopped taking both of them well over a year ago as I was so ill. It took some time to get back to walking normally again - I was in such a state that my husband decided to stop taking statins. He is a lot nicer these days - he was a right pain before.

I was going to click on "Agree" but I don't know your husband (as far as I know).
I was informed that I was far less of a pain after stopping statins.

 

[NickTarn]

Interesting, I reasearched CPK and found it is the enzyme that builds up in muscles destroying them during crush injuries as in earthquake victimes. I did not know that it could build up to such high levels from an alergic reaction but I am not surprised, 5400 was painful enough but 54000 must have been terrible.

I did not seem to suffer any adverse mental effects from the Statins but the Methotrexate makes me very grumpy on the day I take it, so my wife tells me.

 

[TheBigNewt]

Statin not gonna raise CPK that much, rare to do it at all. Muscle pain not rare though. Goes away if you stop statin. Polymyositis pretty rare disease. Hope you get better! (I never do regular stress ECG, only stress echo or nuclear, false + is too common).

 

[NickTarn]

Back in hospital for another round of immunoglobulin infusions but they have reduced the quantity and my blood CPK is back in the normal range. I hope to see the consultant today and wonder if they will need to continue with the next three months infusions?

 

[ElenaP]

Back in hospital for another round of immunoglobulin infusions but they have reduced the quantity and my blood CPK is back in the normal range. I hope to see the consultant today and wonder if they will need to continue with the next three months infusions?

Back in hospital for another round of immunoglobulin infusions but they have reduced the quantity and my blood CPK is back in the normal range. I hope to see the consultant today and wonder if they will need to continue with the next three months infusions?

How are you feeling now?

A type-2 friend of mine has been diagnosed with polymyositis recently. She had lots of tests during the last two months and is now steroids etc. She was fortunate that her GP actually listened to her. She was told that polymyositis is rare but, also, that they diagnosed another person at the same hospital. She was sent to additional tests at a different hospital where she was told that this was caused by her being on statins.
She is being told how rare it is, but I am cynical enough to wonder if it is rare only because not enough people are listened to when they tell GPs of their symptoms. (Number of GPs in the UK still 'see' patients only by telephone conversation.)

 

[MrsA2]

How are you feeling now?

A type-2 friend of mine has been diagnosed with polymyositis recently. She had lots of tests during the last two months and is now steroids etc. She was fortunate that her GP actually listened to her. She was told that polymyositis is rare but, also, that they diagnosed another person at the same hospital. She was sent to additional tests at a different hospital where she was told that this was caused by her being on statins.
She is being told how rare it is, but I am cynical enough to wonder if it is rare only because not enough people are listened to when they tell GPs of their symptoms. (Number of GPs in the UK still 'see' patients only by telephone conversation.)

The post you are replying to was sent in 2018. You may not get a reply. You can start up a new thread if you'd like to.