Actiq pain losenges - anyone else using them??

Hi Everyone!

In writing about my extreme memory loss I realise that the only change in medication that I have had in the past three months has been the inclusion of Actiq pain losenges (they look like suckers, not lollies) instead of the Oral Ordine 10 that I use to take.  The Actiq works very quicky as it is absorbed through the wall of the cheek as you suck them, which means that you don't have to wait for pain relief.  I find that if I use two at once, then the pain is really diminished and I can continue walking or doing whatever I was doing before the pain became too great, ie; a long car journey.  But although I haven't had any other side effects like constipation, perhaps they are the reason for my short term memory loss.  Is anyone else using these losenges for pain relief?  What strength and what have your experiences been?  Any help greatly appreciated. Cheers, Cath

 From Anna,

Hi Cath, Did you look up the side effects of Actiq on the internet?  Just put in the name the med and side effects.  The first 2 links will have the most side effects.

Your friend,

Anna

On 3/12/2009 poppy/cath wrote:

Hi Everyone!

In writing about my extreme memory loss I realise that the only change in medication that I have had in the past three months has been the inclusion of Actiq pain losenges (they look like suckers, not lollies) instead of the Oral Ordine 10 that I use to take.  The Actiq works very quicky as it is absorbed through the wall of the cheek as you suck them, which means that you don't have to wait for pain relief.  I find that if I use two at once, then the pain is really diminished and I can continue walking or doing whatever I was doing before the pain became too great, ie; a long car journey.  But although I haven't had any other side effects like constipation, perhaps they are the reason for my short term memory loss.  Is anyone else using these losenges for pain relief?  What strength and what have your experiences been?  Any help greatly appreciated. Cheers, Cath

 

Poppy Cath: First I will note what "Lollies" are, for the uninitiated they are Candy's in America....I looked up Actiq and it is a fentanyly type patch and I would surmise they do mess up the memory, along with taking other pain meds, it just is the way it is when on long term pain control.

I wanted to know how the numbness in your ?legs etc was coming? Did they find a reason for it ? Are you doing Better? hope you continue to be stable...MMS

On 3/12/2009 poppy/cath wrote:

Hi Everyone!

In writing about my extreme memory loss I realise that the only change in medication that I have had in the past three months has been the inclusion of Actiq pain losenges (they look like suckers, not lollies) instead of the Oral Ordine 10 that I use to take.  The Actiq works very quicky as it is absorbed through the wall of the cheek as you suck them, which means that you don't have to wait for pain relief.  I find that if I use two at once, then the pain is really diminished and I can continue walking or doing whatever I was doing before the pain became too great, ie; a long car journey.  But although I haven't had any other side effects like constipation, perhaps they are the reason for my short term memory loss.  Is anyone else using these losenges for pain relief?  What strength and what have your experiences been?  Any help greatly appreciated. Cheers, Cath

 

Hi MMS~~  When I said that the Actiq was like a lolly, I meant that because it is a lump of substance on the end of a stick it appears very much like a 'lolly pop' or 'sucker'.  It certainly is not what I would consider as a 'losenge' in any language!  A losenge would be similar to a 'boiled lolly' or 'candy' in Australian/American English.  Anyhow it works remarkably well, especially for me as I am very used to the fentynal patches, and doesn't cause me any of the side effects that the Ordine 10 did as a break through medication.  However, nothing that I have read indicates this extreme memory loss which I am experiencing is to be expected.  Still, from the replies I have had to this question it seems that lots of people have suffered exactly the same trials and tribulations that I'm going through.

With regards to the numb leg, my oncologist is still trying to work it out.  He is now having the MRI and latest skeletal survey examined by the top neurologist in town to see if he can find anything which may have been missed.  We are also doing a urine retention test as apparently this can cause pressure on spinal nerves -- we'll see what turns up.  In the meantime I just have to be very careful when walking - particularly on uneven surfaces - because it is very easy to lose my footing and fall, which as we all know is something to be avoided at all costs!!  Its a strange thing, but I've seen my oncologist once a month for the past six years, and each time I try to find something to tell him..isn't that what we do when we go to the doctor?  I may be slow, but now I'm not going to look for things that may be wrong, I'm just going to approach the visit from a completely different perspective.  I'll find out what my blood results are, ask if I need any different prescriptions, get them, and say thanks very much. When a symptom becomes debilitating I will then mention it to him -- I believe being focused on my own health is actually a negative situation as I;'m not looking for the positives!  Does this make sense??  So, thanks for asking.  Hopefully the numbness will either ease or get worse and then we'll do something.  Cheers, Cath

"When a symptom becomes debilitating I will then mention it to him -- I believe being focused on my own health is actually a negative situation as I;'m not looking for the positives!  Does this make sense??  So, thanks for asking.  Hopefully the numbness will either ease or get worse and then we'll do something.  Cheers, Cath"

Dear CAth: I am glad you are gettng taken care if, that numbness is not to be taken lightly, I only hope they can figure it out..Be careful about waiting for the symptoms to become  debilitating as you might be able to head things off at the pass. Because you take note of changes does not mean you are focusing negatively it is good to be aware of something new.  I am sure the bushfire situation did nothing to help as that was traumatic and it all goes to work on our immune system.  Take care and will check back on how you are doing....MMS

 

On 3/12/2009 poppy/cath wrote:

Hi Everyone!

In writing about my extreme memory loss I realise that the only change in medication that I have had in the past three months has been the inclusion of Actiq pain losenges (they look like suckers, not lollies) instead of the Oral Ordine 10 that I use to take.  The Actiq works very quicky as it is absorbed through the wall of the cheek as you suck them, which means that you don't have to wait for pain relief.  I find that if I use two at once, then the pain is really diminished and I can continue walking or doing whatever I was doing before the pain became too great, ie; a long car journey.  But although I haven't had any other side effects like constipation, perhaps they are the reason for my short term memory loss.  Is anyone else using these losenges for pain relief?  What strength and what have your experiences been?  Any help greatly appreciated. Cheers, Cath

I could not fuction without my Actiq I use the 1600 MCG suckers 4 per day per my DR. I have had 5 back surgeries my last one was feb 19 2009 like I said if I did not have Actiq I would be stuck in my bed all day. it works..I have no memory loss in fact I have not suffered any side effects luck me.

Hi WW!  Thank you for responding -- I was beginning to think that I was the only person in the world using the Actiq!!  Its probably because there is so much resistance to using powerful pain medications with people actually refusing the help that their doctor has offered simply because of the historical teachings that we must have nothing to do with morphine and the like!  This really upsets me when I see people suffering who could actually be living life rather than suffering through with extreme pain, simply because they are afraid that they will become addicts if they take advantage of the pain medications that they are being advised to use!!  I no longer have problems with my memory and think that what I was initially experiencing was just part of a settling in period with the Actiq because I no longer have the problems of short term memory loss -- well at least no more than other people my age which is really a factor of aging!!  Now I'm like you -- no problems at all with the Actiq and I am extremely pleased with the quick relief that I get when using it!!    I do hope that others realise when reading these messages that there is pain relief out there which can help people suffering from extreme MM pain and that they won't become addicts if they use it!  Many thanks again, Cath

Hi MMS~~

Unfortunately the MRI showed that my bones are now starting to 'crumble' so my oncologist feels that I need to go back onto the Aridia.  I have agreed, but will only do it on a quarterly basis because I'm still so afraid of ONJ!  We'll check it out after I've had a couple of the IV's (which I'm going to have them give me over a three hour basis because the slower its given the better it seems to be for you) and then I'll decide if I need to go on a monthly basis. Fortunately I don't get any side effects from Aridia, so apart from the 3-4 hours actually having the infusion there is no problem.

With regard to the numbness in my legs and feet it seems to be pressure on nerves in my spine which might probably respond to surgery, but I've decided that I'll learn to live with the numbness rather than face any surgery.  This is because I ended up with major infections and abcesses when I was forced to have the operations for the perforated bowels which resulted from the use of dexamethasone and I vowed then that I would not undergo any surgery EVER unless it was required for me to live.  This numbness would be elective surgery and therefore not something that I will even consider.  Thanks though for asking!!  I had forgotten that I had even mentioned it here as I've just become used to protective 'walking' so that I don't fall because I can't feel my legs!!  

What I meant in my previous message about doctors visits is just that we are so used to going to the doctor only when we have a problem that we want them to fix.  However with MM I go to my doctor once every 3-4 weeks and have been doing so for the past six years!!  Often when I go I only need to have my Revlimid prescription renewed (as it can only be given once a month), but I end up saying things like 'I had an upset tummy, or felt more tired than usual, etc' which in fact was probably due to something that I had eaten or the fact that our grandchildren had been here for a week's visit and no one got much sleep!!!  Then my doctor goes into 'solving mode' and wants to fix my problems, when in reality they really aren't problems!!  If I have a real problem I will be sure to tell him, but I'm working hard not to mention anything thats really just normal day to day activity -- and only comes up because I'm in a doctors office!! Not to worry -- its just about changing my attitudes about doctors simply because I've become very 'at home' in their presence.  I grew up in the era where doctor's were God's right hand men - you didn't question them and followed whatever they said and took 'the tablets' or 'the mixture' without even knowing what was in it -- to now where my doctor is actually the same age as my eldest child and, while brilliant with regard to many, many things, he is actually just a lovely young man doing a great job!!  This is a much better relationship, believe me.  Cheers, Cath