Myositis and Heart Disease

All inflammatory diseases are likely associated with an increased cardiovascular risk, although this is not yet proven for either IIM or psoriasis. In the long term, it is likely that patients with all inflammatory diseases will be treated for cardiovascular risk in the same way as diabetic patients currently are, but this will not happen for IIM/psoriasis until proof becomes available that there is increased risk. So, for now, no smoking, keep thin, plenty of exercise etc, quite right.

Doctors are becoming increasingly super specialized, so become increasing unlikely to know about all in every specialist area.

Yes it could, as CK can normalize, and strength can be normal by manual muscle testing, yet low grade disease could still be present.

Not to my knowledge, but I have not done an extensive review on this issue on pubmed to date.

Anti SRP antibody positive patients are likely at an increased risk of IIM-related cardio-myopathy, and all patients with inflammatory diseases are thought to be at an increased risk of cardiovascular events, although this is not proven yet for myositis.

All patients with inflammatory diseases may be at increased risk of cardiovascular disease, but this has not yet been proven for myositis. Work is ongoing in this area though. The true level of difference between PM and DM is not yet fully understood, but the cardiovacsular risks are probably identical.

May be down to individual choice here, but be guided by your general physician. Make sure that tests have been done to exclude causes of thrombophilia, i.e causes of accelerated clottability.

To my knowledge there is no effective treatment for IBM. I thus had to go onto google to find out what semtical was, and found that this product has not been through the usual rigourous clinical trials required by the FDA, so there is no scientific proof that it works.That is not to say it does not work, merely that there is yet no proof either way.

Pain is relatively unusual in IBM, but I do have patients with IBM-related pain, and this is likely due to the associated inflammation. Your physician could try a small dose of steroids to suppress the latter, this may do the trick.

Do not know what this is, sorry.

Stress is not thought to play any part in the pathogenesis of IBM, but it is well recognized that stress could make any symptoms be perceived as more severe, so stress may be making you feel worse than you might. Perhaps you should see a stress councilor.

Charlie, as a rheumatologist I rarely see IBM cases, as the symptoms usually mimic peripheral neuropathy, and so usually present to neurologists. Questran is good, and suggest you take rigorous care with lifestyle (no smoking, weight down, exercise where possible etc).

Much more likely that it is atherosclerosis rather than the IBM which is the cause of your fibrillation, but could be due to both this and a myopathic process related to your IBM. Suggest be guided by your cardiologist re any tests or treatment.

Zocor and related drugs can cause a myopathy, and this can include inflammatory changes, but statins would be unlikely to cause the very specific pathological changes that characterize IBM, and stopping the drug would be followed by a resolution of your myopathy if this was drug-induced.

It sounds as though you could have antisynthatase syndrome, which is usually associated with vasospasm of the fingers (i.e Raynauds) in combination with arthritis and myositis, and whereby there is inflammation in the lungs. Ask your physician whether this is the case. The treatment of the lung disease is immunosuppression, i.e the same as would be used to suppress you myositis. If you have got lung inflammation which is very stable, your physician may be just trying to allay your fears with his explanations. Alternatively, if you have become very unfit physically because of your myositis, this would tend to make you breathless with relatively little physical exertion. This does not mean that there is a problem with your heart, just that you are unfit.

You should be guided by your physician re: treatment requirements. I have had 3 patients who were in complete remission on treatment, and who all insisted on discontinuing, and all relapsed over time and had to go back on treatment. Our work to determine cardiovascular risks in myositis is only just beginning, so I cannot give you any answers yet in this regard

There is no data yet regarding the level of cardiovascular risk and any myositis sub-type, but it is recognized that steroids do represent a cardiovascular risk, so if you are on steroids, you should discuss this specific issue with your physician. He/she will want to get you on the lowest dose that does the job, i.e so as to minimise the cardiovascular risks.

The only study which has looked at the safety of exercise in myositis concluded that, if the disease was suppressed, then aerobic exercise is safe. Suggest that you check with your physician that the inflammatory component of your disease is suppressed, and only use aerobic exercise. Normal people without IBM get exercise induced problems just the same as yours, if they push themselves, so your post exercise pain may not be related to muscle damage. You could try getting you physician to check your CPK before and 2-3 days after the activity, to see if the levels go up with your regime.

It causes reduced oxygen levels in the pulmonary circulation, and this causes vasospasm, so that the pressure in the right sided vessels has to go up, thus putting stress on the right heart, which can eventually fail. It is for this reason that very expensive specialised vasodilator drugs have been developed. These are undoubtedly prolonging lives in myositis, but more especially in scleroderma.

Your physician would be able to estimate the pressure in your right heart by echo. If normal, then there is no fear at this stage of right heart failure. This would only become a problem if you develop pulmonary hypertension. If your disease is stable at only small doses of steroids, this will minimise the cardiovascular risks, and if your whole body inflammatory status shows low activity (i.e if vyour ESR and/or CRP are low because your disease is suppressed, then your risks from the myositis are minimised. There is the seperate issues of modifyable activities such as smoking, body weight etc, and these need to be addressed seperately.

The familial risk of getting ischaemic heart disease is a product of 2 sets of genes, you mother’s and father’s, and there is no way of knowing, except by evry expensive genetic testing, how the resulting genes aare likely to interact. Thus, although longevity is often familial, it does not always run true. Keep thin, active and do not smoke.

Not yet understood fully. It does however act to raise lipid leves, e.g cholesterol, and its use tends to cause weight gain, which represents a seperate risk for raising lipids. If inflammation represents a cardiovascular risk, then steroids may reduce this risk, by reducing inflammation, but the relative proportions of risk and benefit are currently not known.

It has been thought that rushing around at work may represent a stress that causes heart attacks and strokes. However, it is also the case that people who work very long hours are unlikely to have healthy eating habits, or to take sufficient regular exercise, so that is at least as important a factor for cardiovascular risk induction.

The is no intrinsic way that the disease process of IBM makes it more likely that you will suffer clots. However, as the disease progresses, and you get more and more imobile, then this factor can predispose to clots.

If you take cardiovascular risk first, a blocked coronary artery would manifest as crushing central chest pain a heart attack), so you would recognise this as different. Heart failure from cardiomyopathy could cause breathlessness, but you would then expect other signs of hheart failure, suich as swollen ankles. Best to see aphysician if worried.

There is none.

The CK in the heart contains a different fraction from skeletal muscle, so by doing both fractions, it is possible to tell whether this CK is heart or skeletal in origin. Unlikely that you will manage to get off all treatment without relapsing.

You should get your physician to send you to a centralised clinic. This may mean a large journey, but you will get better answers.