Welcome

[Craig]

Hi to you all. Enjoy this forum and please don't be shy use it..

[Craig Lane]

This contribution is from Pete:-
Treatment

Most of us have been told that there is no treatment for tubular aggregate myopathy. Never accept this statement, never surrender. (Think of Winston, facing the Nazi hordes gathering just across the Channel.)

There are drug and other treatments that have been proven to help some TAM folk. TAM is so variable that they may not help you or not in the way or to the extent reported in others. Rarely the effect may be spectacular; there is one report of an apparent cure. The effect may be subtle in that the accumulation of tubular aggregates may slow or stop. You can only try them and see.

Drug Treatment

WARNING – these are very potent drugs with possible serious side effects. Seek qualified medical advice before taking them. Continuing medical monitoring may be required.

Steroids
There is a report of high dose steroids (prednisone) apparently curing a 57-year-old man. The reference is Gilchrist JM, Steroid-Responsive Tubular Aggregate Myopathy, Muscle & Nerve 14, 1991. A 2002 report of an undiagnosed condition related to TAM showed a reduction in pain with prednisolone.

Dantrolene
This is a very dangerous drug, which may cause liver damage, and therefore continuing liver function monitoring is required. It may not be available in your country. There are a number of reports of benefit from dantrolene in exercise induced muscle pain and specifically TAM.

Diltiazem & Verapamil
These are primarily for high blood pressure. They may have a secondary effect on tubular aggregates.

My Experience
You feel good on steroids so it is hard to be objective about their effect on your muscles. I believe that I was very slightly less likely to injure myself through exercise and very slightly quicker to recover, but it was not worth the risk of prolonged use.

Dantrolene caused liver damage and made my muscles weaker. Horrible stuff but it has helped some folk.

Diltiazem had no effect. Verapamil has been of benefit although subtle. I have less muscle soreness and am slightly more able to exercise.


Comments and contributions please
This is based on my experience and reading of the medical literature, so a very narrow base. Lets broaden this with your own experiences on the forum page. If you want to discuss any of these drugs with your doctor, the medical literature references are available.

Pete

(Am still working on:
Other Treatment
physio
hydrotherapy
gentle progressive exercise
stretching
hypnotherapy
acupuncture
diversionary therapy
dietary restriction)

[georger]

That dantrolene sounds like nasty stuff. Having some success with verapamil myself.

Cheers
George

[denny]

Hey. Is this board active? I was diagnosed about 1 year ago. Not much info available to me, so I thought this sounded very interesting. Problems mostly in the legs and upper arms. After work, hardly able to lift legs to walk, and can not work overhead. Also, no way can I ride a bike. I just started on the dantrolene. Not sure how well it will work yet. Also have diabetes and lupus, so sometimes hard to figure what is causing the problems day to day. Hopefully this site is still active.

[georger]

Hi dledom

Yes it is active, just not enough of us TAM folk to keep up a constant riveting conversation. My experience with dantrolene is that it made me worse and started to cause liver damage. Am having much better success with verapamil. Can let you have the research article on this, email me at the email address at www.tubularaggregatemyopathy.info/. Other things have helped in the past, not so much now.

cheers

George

[asiewert]

What were your symptoms indicating liver impairment with Dantrolene? Any treatment possibilities with hopeful signs would be appreciated. My biggest problem has to do with pain :'( At present, I constantly use Fentanyl transdermal patches, and all it does is take the 'edge' off the pain. The pain has escalated over the past year. Any one have experience dealing with the pain?

[denny]

Does this seem to be progressive in most of you? Just wondering what the majority of symptoms seem to be in this group? Are you all still able to work full time? I have been of Darvocet, Plaquenil and Prednisone since last year. The Plaquenil seems to help my legs. The Darvocet helps somewhat with the pain. I started the Dantrolene about 3 months ago. I don't seem to feel much better with it, but my wife thinks I am getting around better. I went to a Neuromuscular specialist in Indianapolis and he said Tubular Aggregate Myopathy was not progressive and that I would likely not get any better, nor would I get any worse. Currently being treated by a Rheumotologist. Is this true for you guys?

[georger]

Hi TAM folk

My symptoms/signs of damage from dantrolene were general feeling of being unwell and elevated enzymes on a liver function test. Not only that, it weakened the affected muscles so function was worse. horrible stuff, but some folk benefit. Improved when stopped.

Fentanyl transdermal patches, wow that sounds like very heavy duty alalgesia. Have you read any of the many good pain books around? A good one is "Manage Your Pain" by Michael Nicholas. Available in the UK and Australia, don't know about US. There are others that I found helpful. They seem to say that there are limits to what analgesics can do for you. A whole range of other treatments help. Their many case histories describe folk who have been crippled by severe chronic pain who are never going to be pain free but are treated and taught so that the pain is tolerable and they function well again. And no, I do not have a financial interest in this book.

Progressive? My TAM certainly is but quite slow, rapidly accelerated by over exercise and reversed by some treatment such as physical therapy in a heated pool and verapamil. There are numbers of other cases of progression in the medical literature. So it is not true that TAM is not progressive, equally it is not true that you will not get better; you have already found something that helped.

I retired early before TAM showed its ugly head. That must have been my mistake! Am still very active and busy but long past mountain climbing. Plaquenil? Don't know that one, thanks for the suggestion, will look it up.

Cheers

George

[georger]

PS In my particular form of TAM, excessive muscle soreness is a very good indicator of over exercise, just like any healthy person, but at a much lower level of exercise. So I need exercise control and not pain control.

[asiewert]

Before using Dantrolene, I experienced many and frequent fasiculations (twitches) in my biceps and calves. The Dantrolene almost eliminated that after about one month. However, my level of constant pain is high. My muscles (biceps, abdominal and calf) are always painful to the touch, but occasionally (in the biceps) I have severe pain which I can only describe as "someone in my muscle with a knife trying to cut their way out). I am hoping to be placed on Verapamil soon. 4/19/2007 ....About 10 days ago, I saw a different neurologist particularly regarding my pain. He placed me on a drug called LYRICA, and told me to call him in about 10 days after beginning the drug. Well, I could only tolerate the LYRICA for 5 days : ... extreme [glow=red,2,300]mental confusion [/glow](couldn't even remember how to use the microwave oven one morning), dizziness, and somnolence (I would fall asleep with no advance warning whatsoever), And, the LYRICA did nothing to relieve the pain ... personally consider LYRICA a drug to avoid. Guess I will finally be going to a pain clinic. The [glow=red,2,300]"good"[/glow] thing about pain is that it proves that you are still alive!

[Craig Lane]

Hi all,
I see the eternal question of progression of TAM. I have started a thread somewhat obtusely regarding this subject. So I hope eventually others will follow suit and start their own threads and the site will build it's yours for the taking and although we all look for some serious answers I hope that we can also enjoy it with a sense o humor. If we can't laugh at our selves let someone else laugh at our expense ;D
My personal view is; I used to be fit and strong now I ain't so fit or strong if thats progress they can keep it.......

[denny]

As a follow up, I took the Dantrolene for 2+ months. Seemed to make my legs much weaker. Did not improve pain or muscle function. I have quit taking it. My doctor has just started me on Methotrexate and a vitamin called FABB. I think this is more for the Lupus but I will see how it acts. The Methotrexate is a medicine that was prescribed for me to be taken weekly. It sounds like some pretty strong stuff as well!

[georger]

Denny's experience with dantrolene matches mine; made me worse rather than better. I am sticking to Verapamil. A year after I started taking it I am still improving. The benefit may be dose related. Yesterday my doc approved an increase to the max dose of 360mg a day.

Interesting meeting people who have only known me in a wheelchair. They recognise me, we chat for 5 or 10 minutes then they wake up and say "Where's your wheelchair?" I had thought that the wheelchair was the most recognisable thing about me. apparently not.

George

[Craig Lane]

Happy to hear you've lost your wheels Pete. Who are you modeling yourself on now, Little Britain heros still or are you moving on to Victor Meldrew......
This Verapamil sounds as if it's hit the mark for you, are there any drawback side-affects. Having to do the washing up or pickup after yerself or is Chris still mothering you. ;D ;D ;D

[georger]

Side effects of verapamil? My doc warned me that as verapamil lowers your blood pressure and heart rate you could get dizzy or even faint, particularly when rising from sitting or lying down. Fortunately I have never had any dizziness, the only side effect being that my heart rate will not go over 80 to 90. Just like Gaia, the body seems to adjust until you push it too far.

Side effects to being able to walk? I'll say there are. Your shoes wear out faster and have to be cleaned often. You don't get to say "excuse me" every 10 seconds when wheeling through a crowd. (Actually "Mind your toes!" works much better. Never underestimate the power of self interest.) Dickheads (oops! is that language allowed on this forum?) don't seize your wheelchair and push you out of the way. You don't get to pretend you're Andy from Little Britain and say things like "I want that one" and "Yea, I know". You have to give up pretending you're a Dalek or the great Davros himself. All in all this walking business is tough and I may go back to the wheelchair.

Cheers

George

PS have updated my website with abstracts, extracts and summaries of most of the medical articles. See www.tubularaggregatemyopathy.info/