Pain

[Guest guest]

Hi ,

I also use the patch every two days and Oxycontin twice a day what

is the medication you talked about like a sucker, I have Oxycontin break thru

that I use sometimes...Ultram stopped working for me long ago.

Joyce

[Guest guest]

I get a few nursing newsletters each month. One I received today had

an article about using BOTOX for pain control, the case they sited was

for sciatic pain and was administeered at a pain clinic. I wondered if

anyone had heard of this method? I was very intrigued with the concept

and they claim to have success with the technique.

Amy

[Guest guest]

Joyce,

Ultram only works along with the patch and the Actiq ( if I still have pain with

them) Actiq is a sucker that is made up of the same medicine in the Duragesic

path, fentanyl. I have found that this medicine works the best for me. I have

never tried Oxycontin, but I know that is is one of the drugs that does work for

CMT. When I first was diagnosed with CMT, I didn't quite know how to handle the

pain I was feeling, so I called CMTA to see if there was someone out there who I

could talk to that would understand what I was going through. Well they didn't

send me to anyone, and the person on the phone told me that he had CMT, and

rarely felt pain. What a blow, I felt so alone. But, they did email a

transcript of a presentation that Dr. Scherer, M.D.,Ph.D made at a CMTA

patient/family conference at the University of Pennsylvcania Medical School. I

will attempt to attach the speech. If it doesn't work email me and I will try

again.

[Guest guest]

Dear Sue 0.001,

I have bone pain in my shins from time to time. It comes and goes. Is the

doctor giving you anything for it? I take Etodolac. As for my joints, well

that's all the time. I had a Kenalog Injection about 3 weeks ago, but that's

worn off already and ready for the next one, but he only does it every 3 months.

I can barely climb the curb unless I can hold on to something. How is the

weather down under, still cold? It is very hot and muggy here.

xoxoxoxox

Lottie

[Guest guest]

G'day Judy to a fellow Aussie.

Have you tried taking Panadol Osteo? PO is a slow release paracetamol and

really helps by taking 8 hourly. My BIL has multiple myeloma and was having

lots of problems sleeping at night and would be tossing and groaning during

the night, but has found it gives him good relief, so that he can get up and

going in the morning.

Cheers



-- [ ] pain

Hi I don,t post often but read alot and am very grateful for all the helpful

information provided by all of you. I'm on 600 mg of Glivec since 2004. I

relapsed with cml after a bmt in 1993. Lately I have been having severe hip

pain and am finding it difficult to get pain relief. My local doctor is

sending

me for x-rays and talking about hip replacement. This comes on top of

severe

shoulder pain earlier in the year which has settled but not completely gone

away. I find it difficult to walk up and down stairs, get up from a chair

and

need assistance to get up from the floor. I find all my joints are hurting

particularly when I try to sleep. I'm 58 and consider myself to be pretty

active and fit. I was wondering if anyone else is noticing increased joint

pain

over time on glivec. My calcium levels are normal and I have been pcru for

the

last 2 years.

Judy Telford

[Guest guest]

I'm on 600 mg of Glivec since 2004.  I

> relapsed with cml after a bmt in 1993.  Lately I have been having severe hip

> pain and am finding it difficult to get pain relief.  My local doctor is

sending

> me for x-rays and talking about hip replacement.  This comes on top of severe

> shoulder pain earlier in the year which has settled but not completely gone

> away. 

> Judy Telford

_________________________

Hi Judy,

Here are a few ideas that I have for you.

Could your treatment for the BMT have caused some kind of bone problem? have you

asked about that? did you have full body irradiation? have you discussed these

problems with your BMT center?

I do remember one person, in her mid-30's I think, that did develop avascular

necrosis of the hip related to taking Gleevec (the only drug at that time). I

think she went on to have a total hip replacement.

Is the hip pain bilateral? if so, it seems that it is less likely to be

osteoarthritis....this is more often one sided due to an old injury or just wear

and tear.

I do have a cml friend who has been on Gleevec and now Sprycel and she has had

significant joint problems, in the hips and shoulders I think. She found that

she had some calcium deposits along tendons in the shoulder.

I would want a complete work-up before opting for a total hip replacement at

your age. This might include seeing a rheumatologist, and orthopedist, having an

MRI, etc.

Hope this gives you a few ideas to look into.

C. (retired physical therapist)

[Guest guest]

Hi Judy,

I am on Sprycel and also suffer from chronic pain. It fluctuates as

to intensity depending on weather, activity level etc.

I find I can manage it in the following ways:

1) I take Naproxen daily (just once a day in the morning, as twice a

day upsets my stomach);

2) I see a chiropractor regularly. TKI's cause chronic inflammation

in soft tissue, which causes tightening of muscles, which causes more

pain.. The end result is that the body is out of alignment (fancy

word for unbalanced) which stress joints in different ways. I get

adjusted anywhere from 2-4 times a month. I recently had to take a

break for a month and was surprised how much more pain I was in;

3) I get a massage as often as I can afford (about once every 3-4

months -wish I could do that every week!). this works out some of the

deeper tension that is at the root of some of the pain;

4) I do yoga almost every day -nothing strenuous, just a routine of

stretches that I do at home

5) try to stay away from inflammatory foods (esp white flour and sugar)

all the best,

Leah Peer

leahpeer@...