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View Full Version : Leg , hand cramping and Tonic Water



Walter Wolynsky
06-28-2010, 02:32 PM
Hello fellow Wegger's. Hoping that I'm not reposting something here. I was diagnosed with WG after confirmation from VA Thoracic Surgery. I began a protocol which I have been on for 2 months...(daily Prednisone being tapered, Septra, Cyclophosphamide 100 mg. / day, calcium supplements...and other support stuff). In addition to some other pretty crappy side effects I experience cramping/soreness in both my calves...and sometimes while driving when my hand is clenched around the steering wheel my hand will spasm, almost palsy-like where some of the fingers "seize" and are unresponsive for up to several hours. The calf cramps last a long time. My question is...."Has anyone experience with "Tonic Water" ingested as a relief or therapy for such cramping benefitting from the "Quinine" in the beverage. Any other Quinine sources prove useful? Does it really work? I have not seen results yet.

Walter...in Surrey, BC

Jack
06-28-2010, 05:34 PM
I used to get cramps which turned out to be due to a lack of salt. I used to make a point of using none at all and don't eat much processed food, but now I just use a little in cooking.

I recommend Gin with the Tonic water. Not sure what effect it has on cramps though! ;)

Kimbangu
06-28-2010, 07:18 PM
I get that arm condition whilst driving, exactly as you describe. In fact at one time I was frightened to drive in case I got the spasm at a junction or something. I found that regularly wriggling my fingers stopped this from happening. I 'd love to know if there was any "straightforward" thing I could drink, to stop this from happening. From my experiences in malarial countries, most people say the amount of quinine in tonic water is absolutely miniscule, in fat there may not be any at all nowadays.

How much pred are you on? - I tend to associate the cramping with pred, because as I reduced the pred, so the cramping reduced too.

Sangye
06-29-2010, 02:02 AM
Walter, I don't know about using tonic water (but had to giggle at Jack's suggestion nevertheless). But that cramping is a typical side effect of pred. Taking extra magnesium and adding a little sea salt to your food will usually relieve it. Pred depletes both. Don't go crazy with the salt. If you can get celtic sea salt, that's the best.

I have a funny story about pred muscle cramps: Last December in the middle of a blizzard, I had to turn in some paperwork and a fee. On the way there I got stuck in a huge traffic jam. By the time I arrived at the building, I had barely enough time to race across the icy parking lot and turn in the paperwork on time. I can barely walk 100ft and this was way longer. I was still using a crutch. I hurried out of the car and immediately got several muscle cramps in my feet and legs. I couldn't stop, though, and every few feet I got more and more. By the time I arrived I was all contorted and in a world of hurt. The clerk mumbled that I hadn't brought exact change so he couldn't accept the paperwork. I think I actually growled at him. I gave him a death stare and he dug up some change.... :D

TBulger
06-29-2010, 06:51 AM
Sangye,

Loved the growl! We've all been there but rarely actually follow through. Thanks for the tip. I've been having all of this and an intense craving for salt. With my high blood pressure I try to avoid salt as much as possible so I guess I have just been making it worse. I'll look for celtic salt. I'm wondering if I should add tequila and lemon.

Sangye
06-29-2010, 11:26 AM
Adrenal weakness causes salt cravings. The difficulty is that when the adrenal weakness is due to pred, salt makes you swell more (and certainly raises the bp). If you eliminate processed foods and just use a bit of Celtic sea salt, you'll help your adrenals without upsetting the apple cart.

I'll leave it to the others to advise your choice of drinks! :D

jola57
07-07-2010, 07:34 PM
I try to use sea salt now on everything. Sangye I laughed at the growl, boy how I can relate to that. When you are in a world of hurt and just want to be back on your way any thing like an obstacle and I am fit to chew whoever is in my way. This relates. Couple of days ago I was in a Polish supermarket, they have a special checkout with a priority for pregnant women and disabled persons. Wellll, it was packed, and nobody was letting me in. Granted I was not in a wheelchair, but I had my cane and was red like a beet and sweating buckets. On my third try to see if someone would let me pass I moved sideways to the cashier and in my growly voice asked if this is the handicapped checkout and how can I get thru. She let me in by having me go to the exit. There were a lot of angry stares but nobody voiced any objections.

marta
07-30-2010, 05:24 PM
I recommend Gin with the Tonic water. Not sure what effect it has on cramps though! ;)

You're a funny man Jack.

pberggren1
07-30-2010, 06:29 PM
whiskey worked not to bad for me!

Walter Wolynsky
07-31-2010, 02:53 PM
Incidentally...don't know about the Gin or Whiskey...but the cramps have all but disappeared...(on my good doctor's advice)..from drinking tonic water occassionally!

pberggren1
07-31-2010, 02:54 PM
Tonic water is just carbonated water right?

Walter Wolynsky
07-31-2010, 02:55 PM
That is kind of funny sangye...good you have a humorous outlook on it my friend!

Walter Wolynsky
07-31-2010, 02:56 PM
Tonic water has Quinine in it. It was used to treat Malaria but has other benefits as well.

Walter Wolynsky
07-31-2010, 03:00 PM
I started at 100 mg. a day 3 months ago...now down to 17.5 mgs. per day. The weight gain has been a big issue for me now. As far as volume of Quinine in tonic water, I read that there is hundreds x's more quinine in tonic water than found in herbal preparations in health stores. I have actually become fond of the taste!

Sangye
07-31-2010, 11:14 PM
Nice to hear from you, Walter. How are you feeling these days?

elephant
07-31-2010, 11:17 PM
Yea Walter how are you doing?

Doug
07-31-2010, 11:17 PM
Gin and tonic....mmmmm! Jack, that takes me back to my wasted youth!

Walter Wolynsky
08-01-2010, 12:32 AM
Three months after Video Assisted Thoracic Surgery:
The biopsy confirmed WG and I began a treatment consisting of 100 mg/day Prednisone (now at 17.5 mg/day), started Cyclophosphamide at 50 mg/day to 100 mg/day and most recently reduced to 75 mg/day. Septra (antibiotic) 2 x's per day for 3 days/week just reduced to once/day. Also take Calcium and Vitamin D supplements as well as Didrical.

As we all know, the side effects from the drugs take their own toll...weight gain,nausea, sometimes constipation,cramping and for me, a lot of fatigue. I believe it cost me a relationship as my girlfriend called it quits a few days ago. I didn't need to ask her as I felt it was obvious...I wasn't the same energetic person anymore.

My regular monthly blood work shows inflammation markers are returning to normal.. cat scans indicate lungs are more clear than before and my asthma-like and sinus difficulties have essentially disappeared. The right side of my chest feels weird still, (from the surgery)...a combination of numbness in places and the odd flashing/stabbing/burning sensation in areas however none of these are dramatic. The biggest effects from the medication and by far my largest concern are what has happened to my bladder. Having to ingest copious amounts of water and running to the bathroom frequently becomes a fact of life. Lately the process of elimination has become strained with the need becoming more frequent. I attribute this to my slowing down my water intake. I cannot stress enough to newbies who come along to drink LARGE amounts of water after taking Cyclophoswhatever. I knew this was important...my doctor continuously hammered this away at me, (bless her little heart...god...if she wasn't married), and yet I didn't maintain the intake regimen. In the early stages I was drinking 16 glasses of water a day. I'm lucky if it's half that now. It is also important that a large volume of that water be consumed while taking the med and for the period after that. As a result, I now have a Cystoscopy booked for August 11th. Here we go again! So...my message folks is...FLUSH,FLUSH,FLUSH.

The writing has fatigued me so here endeth the story...and because I am a slave to my self employment..Hi Ho, Hi Ho it's off to work I go! I will voluntarily post a mug shot and put a face to the name.

Sangye
08-01-2010, 12:44 AM
Walter, I'm happy to hear the Wegs is getting under control.

Yes, the ctx is a dangerous drug. Thank you for warning others about not drinking enough. If you get a chance, would you mind posting that warning in the new thread I started What the Newly-Diagnosed Need to Know (http://wegeners-granulomatosis.com/forum/general-wg-chat/986-what-newly-diagnosed-need-know.html) So many newly-dxed are on ctx. I hope the cytoscopy is negative and the problem corrects itself.

misskay
08-01-2010, 01:07 AM
The right side of my chest feels weird still, (from the surgery)...a combination of numbness in places and the odd flashing/stabbing/burning sensation in areas however none of these are dramatic

Still have the same issues here ( surgey was mid-June)... at first I thought it was shingles, but no rash. Almost feels like I've got my ribs taped on that side. The chest tubes 'holes' are still not healed and one is possibly starting to get infected. Anyone got any words of wisdom? Right now I wash the sites twice a day with peroxide, dab on some antibiotic cream and loosely bandage to keep clothes from chafing. And NO bra unless I'm leaving the house...

elephant
08-01-2010, 02:07 AM
I too had the Video Assisted thoracic surgery march 2009 and still feel like my left side of chest is wierd..tight...but it is scar tissue. I think the medicines that I am on and you all are on kinda does a slop job of healing our wounds. I guess I have to live with it. If you think you have an infection see the doctor immediately and have your thoracic surgeon check it out.

Sangye
08-01-2010, 02:17 AM
Misskay, I agree with Elephant--definitely get it checked out right away if anything looks odd.

misskay
08-01-2010, 02:37 AM
Surgeon looked at it this week. It was his idea to start the peroxide, etc. I'm not 'really' worried about it yet... just wondered if anyone here had experience with the issue of non-healing wounds and had any thing to add that might help. I know the meds slow the healing process to a dang crawl, but enough already lol

Sangye
08-01-2010, 03:17 AM
I had two leg ulcers that each took 9 months to a year to close. They were vasculitic ulcers, though, not a wound. A wound is less complicated to heal! I'm so glad you saw your doc. I guess it's just a matter of waiting?

misskay
08-01-2010, 03:24 AM
yay to waiting...NOT! lol
Am having vasculitis issues with a few fingers. Not wounds yet, but very painful and discolored with a couple of red spots that are 'suspect'. We're keeping a close eye on those. Seems the fun never ends.

pberggren1
08-01-2010, 08:32 AM
Still have the same issues here ( surgey was mid-June)... at first I thought it was shingles, but no rash. Almost feels like I've got my ribs taped on that side. The chest tubes 'holes' are still not healed and one is possibly starting to get infected. Anyone got any words of wisdom? Right now I wash the sites twice a day with peroxide, dab on some antibiotic cream and loosely bandage to keep clothes from chafing. And NO bra unless I'm leaving the house...

I have heard of ingesting a few drops of hydrogen peroxide (food grade) with a glass of water each day. What do you say to this Sangye? Also what about the same with Iodine?

Sangye
08-01-2010, 11:05 AM
I don't know about doing that with Wegs. It's a good general practice for otherwise healthy people, though.

For iodine, you definitely should make sure you need it and then take it in the form of a supplement.

pberggren1
08-01-2010, 11:16 AM
How do you find out if you need iodine Sangye?

Walter Wolynsky
08-01-2010, 02:21 PM
You're doing the right thing Misskay. Keep it clean. Change bandages. It gets better. In my case I work outdoors...got sweatied up and my bandages came loose all the time. Constantly thought it was the end of the world. I just peeled off the old bandages...washed around the area..put on new bandages and everything worked out. Externally the wounds are all healed. Internally...it takes about 8 months for the sliced nerves to regenerate, reattach and calm down.

onatreetop
08-01-2010, 02:32 PM
My choice would have to be wine. My prim doc told me not to many sports drinks .Drink water with just a little bit of 100% apple juice and your body gets everything it would out of the sports drink. The way I sweat I need it by the gallons. When I dont drink enough water I noticed more swelling?