6 replies to this topic

[Happycat]

Hi, everyone,

Wouldn't you know it?  I felt fine taking the Gleevec before vacation, but on the drive down the Williamsburg, the pain set in.  (It's a tradition with me.  I have to have something making me miserable during vacation.  Last year it was poison ivy.)

Anyway, I'm having persistent pain in my forearms and thighs.  The forearms are the worst.  I sometimes get joint pain (elbow, wrist, knee), and a little bit of finger pain.  It's  mostly a dull ache, but sometimes it's throbbing and very strong.  It even had me crying one night, and I gave birth to twins naturally (not by choice) and never cried then, so this pain was pretty strong.

I'm looking for any suggestions I haven't tried that have worked for you.  Here's what I've tried and some things I can't do:

1)  Ibuprofen - can't take it any more (doctor's orders, they think I've been on it too long already for my neck injury, causing clotting problems, so that's out

2)  Other NSAIDS - Aleve, Naproxen, etc. -  I'm allergic to aspirin, and other NSAIDs are generally not prescribed for me because of the aspirin allergy. 

3)  Tylenol - just doesn't do much for it. It's not an anti-inflammatory, so that doesn't surprise me.  Doc has limited me to 3 x 500 mg per day for pain, but I don't see the point of taking it if it doesn't help.

4)  Vicodin (5 mg with tylenol) - also doesn't do much.   Mind you, that was leftover vicodin prescribed after a dental implant, so maybe I just need a stronger dose?? 

5)  Heat seems to help, a hot shower, or heating pad - but pain comes back fairly quickly

6)  ICY HOT - this has helped the most, but I only do it at bedtime so I don't walk around smelling like my arthritic grandma.  I'm not sure if it is the heat that helps, or if it's the methyl salicylate in it (an aspirin analog, so it's anti-inflammatory).  Since it doesn't get into the bloodstream (not large enough amounts anyway), I can use the ICY HOT, even though I should technically be allergic to it.

7)  Flexeril - 10 mg.  Not sure how much this has helped, if at all.  How do you tell muscle spasm pain from bone pain?  If it's muscle spasm, it ought to help.  I've been taking it at night, along with other stuff, so I never took it alone and can't really judge effectiveness.

8)  Bananas - I was having some foot cramps, seemed to help with those.  But not the forearm/thigh pain.

9)  Zrytec/singulair - I already take these for my allergies, so I am getting whatever concomitant benefit they might provide, but it's not enough for the pain.

TIA!

Traci

[bsbk13]

Traci, hi.....Bill has experimented with several different pain relievers, both prescription and over the counter.  For bone/joint pain, he feels that 3 tylenol are as good as anything else he's tried.  For muscle, though, he says percocet is the only thing that touches it.  He's allowed to take 1-2 percosets ever 4 hours, but he generally takes 1 every 6-8 hours if he needs it, and often much less.  Last night he took 2 percocets at bedtime, and that allowed him to get a good full night's sleep.   He has tried morphine, dilaudid, tramadol....can't think what else, with only minimal effect.    He doesn't like to take them, especially since they're not helping much, but the "perkys" have been a good choice for him.

But of course everyone reacts differently to pain relievers.  He also likes Biofreeze for topical application.

One thing we've thought about trying is that new Tylenol.....whatever.....that is a cream you rub on.  Think I'll pick that up today.

Do you have access to a hot tub?

[GerryL]

Hi Traci,

You could try taking a calcium & magnesium supplement and if it has some vitamin D in it even better. Gleevec can prevent the body taking up calcium and magnesium and a loss of these can contribute to joint pain. Just be sure to take it at least 3 hours apart from Gleevec as they tend to interact with each other. As it is a supplement it can take a little while to kick in, but you may find it helps. You'll need to keep a check on your calcium levels as losing calcium will also affect your teeth, your doctor should be including a blood work up which will track these things for you.

Gerry

[WoofWoof]

Hi Traci- Tramadol works pretty well for me. See if your Dr. thinks it could help you.

[Vandyfan]

Traci, I have lots of these pains, and I can endorse the tramadol along with the calcium-magnesium-zinc supplements.  I still have to rely on Motrin despite the issues.   One issue that may make my experience different is having a degenerative disc; I never know if the leg pain is from the sciatic nerve running down the leg from the disc or if it is Gleevec.  I do know that some days nothing helps.   Best wishes on a tough problem.

[nathaliece]

Traci,

Sorry to hear about the pain you experienced during your vacation.  I have one coming up in a month or so and have worried about it too.  My onc gave me a prescription of hydrocodone for the pain and it helps take the edge off.  When my pain is most intense, it is in my hands.  Once, it was so bad, my onc gave me a 4 day gleevec vacation.  Sending prayers and positive thoughts your way that this passes very soon for you.

Nat