I have what is starting to appear to be permanent nerve damage which is primarily in my legs. I take Theophylline and Terbutaline. I am experience increasing cramping that temporarily deforming my hands and feet. This is occuring mostly on the left side of my body. I have talked to my Doctor about the cramping but have not gotten an answer. Has anyone else had this problem? I have also noticed more tingle and numbness in other parts of my body, like my face and arms. Any informatrion would be appreciated.

It could be an overdose of theophylline which causes a respiratory alkalosis or even a hypomagnesemia. It worths to examine teophylline concentration in blood which must not exed 20 ug/ml. Terbutaline may also produce cramping and lactic acidosis. You should ask your doctor if both drugs are to be carefully decreased. Claude Pfefferlé

Thank you, my theophyllin is monitored monthly and has been fine. I will talk to my doctor about the Terbutaline, I have not been on it as long and the cramping started after I started the terbualine. I take 40mg of furosemide a day which seem to cause some of the same problems. It sounds to me like maybe I should have my Doctor review the doses of all my meds.

It is obvious that none of us are the same, I believe we all take different meds. I was started on theo-24 and terbutaline last year as well. My doctor perscribed aminophylline as an alternative. It is an older version of theophylline. Since on aminopyhilline, i now sleep through the night, no cramping at all, and way less leaks. Also, a lot less bitchy when I stopped taking terbutaline. The strange thing is that aminopyhilline costs $21.00 a month at 1200 mg a day. That is without any medical coverage. It is negligble with medical. So ask your doctor. This may be a an alternative med for you. It is very interesting when you look up the two on the web.

*My daughter brenda bonilla complains of severe leg cramping she had an episode of the capillary leaking this august and almost passed away her previous episode was in january 2009. The pains are terrible and I am always in the emergency room. She is on theophillyn and also takes lasix and prednisone for the capillary leak please help she is only 19 and I am her caregiver and it's very hard for me to see her with so much pain.

It could be possible the association of Lasix and Theophylline increase their side effects each other. Ask your Doctor if Lasix is necessary for your treatment. Claude Pfefferlé

Glenn's pain was always attributed to the damage to the muscles and tissues by separation the fluid caused and constantly trying for those things to heal then more damage...a cycle

This last two weeks her cramps have been almost everynight. I took her of lasix. let's try that but it's so hard I don't know what to do she is taking so much pain medicine. But what you said can be true. What kind of doctor shouls treat brenda she was diagnosed by her kidney doctor.

My brother allen's first leak 6yrs ago was a major episode with fasciaotomies of extremeties due to swelling , severe rhabdomyalysis (muscle breakdown) and was left with dropped foot (nerve damage). He travelled to mayo clinic in rochester, minnisota for diagnosis and to discuss treatment after doctors in washingtonton dc could not diagnose. Dr haymons and dr greipp of the mayo clinic who I believe specialize in hematology made the diagnosis and set up treatment. At that time (2003) they were the only experts in treatment and daignosing SCLS in th US so well worth the trip just because they have been treating SCLS for at least a decade and had seen other SCLS patients for that long. A diagnosis we did not like hearing but a positive experience because we had a name for what happened and a plan. They had pattients that were managing the disease and doing fairly well for periods of years. My brother found a hemotologist in dc where he lives who manages his testing and treatment and the commmunication with mayo clinuc is still there if there is a question or problem. He has also seen dr druey at NIH and he has also been active part in my brohers SCLS management. A hemotologist would be the type of doctor to see I think and dr greipp, dr haymons, or dr druey may have a recommendation for a doctor in your area as was my brothers case. As far as pain control goes he was initially put on nuerontin (blocks nerve pain) for I think at least a year due to nerve and muscle damage. The pain iis significant and I remember him telling me worse at night preventing sleep after that severe episode. The neurontin was really helpful and eventually his pain decreased and now he is just on his theophylline. His only other major episode was sept 2009 which was not as bad but still ended up in ICU but did not have rhabdomyalysis or further nerve damage so no increase in pain or need for meds. The pain meds most likely shoud be needed temporarily. One nice thing about the neurontin is that a side effect is that it raises serontonin levels (at least that is what I was told at a pharmacology class a few years ago). That is the feel good chemical released when you eat chocolate or are happy. I always thought that helped him keep a posituve attitude initially when this all happened. His own positive attitude has carried hem to date which is so important and I know must be difficult at times. As a patient, be your own advocate and don't stop until you get your answers and a plan. SCLS won't go away but for many it is manageble.

I too, am having a lot of cramps in my fingers and toes, but also other places as well. I get cramps in my rib cage while buckling my seat belt. I also get them below my shoulder blades. I'll be in NIH next week, and plan to discucc this with Dr. Druey.

Glenn also siad Neurontin was helpful for this nerve pain

I get cramps in legs, hands, rib cage, back, jaw, etc. about once a week. Doctors aren't sure what is causing this.

Brenda was put on neurontin today the doctors actually listened. She is still in the hospital with pain but i will keep you updated. Mom

Let brenda know we r thinking of her and hope the neurontin helps. I know with my brother he had to take a fairly high dose to get relief (they work you up to a certain dose and then gradually reduce it when the pains subsides) it might make her sleepy which is probably a good thing as well. I do also remember him taking ambien at some point to help with sleep but not sure if that can be taken with neurontin

I had to take a fairly large dosage of neurontin initially. I then began having trouble sleeping. Doctor prescribed Amitriptyline as an alternative to help with sleep.

You know what bugs me when they send the psychologist in because they don't believe she has pain. If you know brenda she's not the type of girl that wants to make pain up or that's depress. Well I guess when they can't find the cause that's what they always do. But I am praying we can find a solution soon. MOM P.S She was prescribed neurontin

of couse, there is pain with major fluid shifts...that would not be the reason for sending someone in...however, she may wish to talk to someone since she has been diagnosed with an unpredictable illness that is often fatal

Brenda has short bowel syndrome was dx in 2002 with aplastic anemia she had a bone marrow transplant in 2007 has kidney failure malignant high blood preassure she is tpn dependeant she has an enlarged liver.had 2 strokes during transplant and now has clarkson's so she has been thru alote.She's a true miracle and she keeps on getting every thing out there.

what a hand brenda has been delt!! SCLS is difficult on its own much less all the other in someone so young. my thoughts are with you both and i really hope they can get her comfortable and stable

wow, what a struggle. hope you can both find comfort in something that helps you deal with all that.

Thank you for your support it's so good to be able to have support and I just wanted to mention brenda is on 100 mg of neurontin 3 times a day.

I find myself taking a different path to a lot of people on here, I decided a few years back after being offered antidepressants for the pain (muscles cramps , left side mainly - my left side felt nearly completely numb at one point) by a neurologist that i was going to seek a different approach to my condition than drugs. I try not to eat dairy protien at all - I feel this is what causes my problems When I do succumb and eat dairy the problems begin again after a few days- for pain I use acupuncture and chiropractic I then give my body chance to cleanse again and drink warm water and fresh lemon juice each morning I drink herbal tea containing milk thistle and liquorice. After I have been swollen and the plasma has moved into the wrong place - I then use chinese herbs to check the viscosity of my blood - sacandra glaber and radix noto gensing - this takes the pains away within a day - I feel the pain is caused by stagnation of the fluids and the protiens in the muscle tissue so I encourage it to move with massage. I do feel the condition can be managed without drugs - I am not convincved the drugs work at all in fact I feel they make it worse - the only pharma drug I take is antihistamine when I feel my body tingling at the onset of an attack - antihistamine is a vaso constrictor (it closes capillaries down and stops or slows the leak in its intial stages) Its my opinion - you may not like it - but it works for me

can someone tell me how bad are this cramps are my daughter screams like they are killing her and i dont know what to do anymore.

Pretty bad at night, initially. She may need to up her dosage of neurontin. I started at 300 mg but quickly went to 1500 to 2000 mg per day. Within a couple of months I weaned myself off the drug as my activity level increased.

Thank you for your response. I feel so bad for her she tells me that nobody understand her pain and that we act like if we dont care. I do care it's that they are so frequent it's so hard to deal with it. Im going to go up on her neurontin 200 mg 3 times a day. I will see if it helps. The pain doctors put her on ativan.

I'm very sorry to hear that you and your daughter are going through this. The one thing my husband and I learned during all this is that someone needs to be the patient advocate. Don't back off - your daughter needs you. My neuropathy started after my first attack when I left the hospital with bilateral foot drop after taking on over 20 liters of fluids. The doctors did not warn me of the neuropathy that I would begin experiencing. I saw a neurologist who prescribed a low dose of neurontin (300 mg per day). The pain did not go away. I began researching on the internet and found that a 300 mg is a very low dosage. Dosage in the 1800 mg per day was common to treat neuropathy resulting from various disorders. I was reluctant to increase my dosage because of fear of addiction or overdose, but I had to do something for the pain. (I'm not pill popper - I try not take any medicine to relieve pain or symptons. And, when I do, I usually take half the dose for over the counter medicine). I've taken ativan a few times for anxiety while undergoing chemotherapy. It was not prescribed to me for the neuropathy. I'd ask the pain doctors about using ativan for neuropathy. She may be better off with higher dosage of neurontin in place of the ativan. Just a suggestion.

Hi Just wanted to update every one on brendas leg cramps she is on 200 mg 3 times a day and that seemed to work. No ativan. Thank you for all your help Mom

So glad brenda is doing better!! I had talked to my brother and he was taking a high dose of nuerontin (the 1800 mg range) right after his first episode and with time (a year or so later) was able to go off of it. He was also taking trileptol. Not sure if that is spelled correctly or the dose. He seemed to think this was for pain also. Regardless he said the pain eventually goes away but initially it is quite severe so I am glad she is more comfortable and hope she continues to improve. Our thoughts are with you

Thank you so much......