Lyrica

[helenlegs 11]

Hi Kathyd,

You are proposing to do exactly what I have just done.
I was prescribed Lyrica some time ago but there was such a lot going on at that time with my Mam (alzheimer's) and my Dad and I were trying to care for her at home as no 'care givers' could cope with her. She is in a care home now so things are much less stressful. I think at that time I was just SO exhausted that I found the Lyrica actually worked too well and allowed me to sleep at night, but I was so knocked out (exhaustion?) that I don't think I was even moving about in the night and was waking up with muscle pain, where I had never had muscle pain before??? I still don't really understand what was going on but had read that muscle pain could be a side effect. As we all know mornings are our best time so I decided to stop taking the Lyrica to at least get my early morning 'ability' back.
Anyway I decided to start up again and must admit that I didn't ask permission from anyone, pain consultant or whomever. BUT I think because I have noticed a slight benefit from this drug (mine are only 25mg's too) after a bit of a conflab and confusion, I have been prescribed it again.
This drug is often difficult to get prescribed due to cost issues in the UK (NHS) so the fact that it was helping me must have influenced their decision to keep prescribing it.
If I were you I would start taking them again and see if they work for you (ramp them up slowly if you find the space you out, or give any other difficultish side effects)
They do have a spacing out effect on me but I am taking 75mgs per day now, although I didn't have any for over a week of conflab and confusion, already mentioned. So now know that withdrawal at that level isn't so bad either .
I think that it would be very informative for your up and coming appointment to be able to give any information about how they do work for you, although it may be to soon to have too much feedback on good pain reduction, any side effects (like your bladder issue and my muscle pain) may be apparent by then. The way to treat this with medication is to try and assess, your own feedback can only help medics to know how to proceed and treat you.
I am a bit spaced by them, but did expect that and have a dry mouth but have experienced no muscle pain when waking this time thankfully.
Good luck next week,

Helen

[kathyd]

Hi Calluna and Helen,
Thx so much for your quick responses on Lyrica,..must admit I am feeling a bit scared of starting up a med again on my own, due to my bladder issue and the fact that Im still on the danged methodone and the diluadid supps. I do want to get off the latter, but the supps are the only bit of "relief" I get, esp the 2nd one which I take in the evening.. The releif now lasts only for a short time, but I can feeling the throbbing go down just a tiny bit.. right after I insert. But it wears off fast.
I also forgot to mention I wear Flector Topical pain patches (Diclofenac is the generic name) on my butt near the anus.. they help a tiny bit ...since they are only topical I wonder how much they play into the mix?
My pelvic gyn did see me recently, but at the time I was still with the pain doc and she kinda turned all pain meds over to him. Sorry if I repeat myself but I became her patient in the fall when my doc (who was passionate about helping women with severe pelvic and vulvar pain)stepped down for personal reasons. So this overwhelmed doc doesn't want to treat the pain issue. She can' r rx opiates by a new law, but can rx Lyrica and other non -opiate pain meds. Treating and diagnosing the pain issue was the main reason I became a patient at their pricey NYC practice... My doc was known as a compassionate expert in this area.. Anyway felt lost when my current doc who rx'ed the Lyrica in Feb., now refuses to dose it.
Calluna, I will take a look at your dosing schedule...thx so much for posting it! that should serve as a great guideline to get me started, until God-willing I meet a willing and compassionate pain mgmt doc.
Good suggestion about calling my GP... (she is bit reluctant as she says PN pain is "out of her league") but it mayb e re-assurig if she chimes in..
Either way I will be brave and go for it..
One thing that complicates (forget if I mentioned) is that last week I started Baclofen supps as Rx'd by a compounding pharmacsit out of state who is experienced at making up vaginal and rectal supps for ladies with Vulvadynia, IC, PN etc.. His goal and mine is a combo rectal supp like (balcofen/ketamine for ex but he insisted we start low on just baclofen.. and wants the input of pain dco
As expected the Baclfoen does nothing to help and I feel some slight retention which passes tho.
So If add Lyrica to the mix, and possibly get more retention (see how my mind works!) it'll be hard to know which med is doing it.
But my feeling is the danged other meds-that I want off of (methadone etc) would be the cause.
I can ask the pharmacist about this,, while Im waiting to get a new pain doc.
But yikes its so confusing...wondering if I should skip the Baclofen for a day or 2 while I get going on the Lyrica... (since the Baclofen is not yet helpful ..he wants me to up it to a few a day...Some confusing choices here.g
I interview a new pain doc on Thurs and hoping his practice will be interested in managing meds for me. I hear good things about them.
Ladies, thx for your understanding and help! Both hubby and I are feeling so Lost.
Helen hope things go with your mom, and I wish you luck as you restart Lyrica as well.
I have an elderly mom as well,... she has balance/falling issues and can 't live alone so we have a live- in aide with her at her home. Another reason I pray to feel better so I can see my mom more and take her out!
Thx again for any opinions. Hubby is eager for me to start the Lyrica..It will bethe first Ques. he asks when he gets home !

[helenlegs 11]

Hi kathy,

It's so nice that your husband cares that much .
I am a great believer in being cautious when mixing medications so appreciate your dilemma more now.
Personally I would stay with the Baclofen you have been recently prescribed and titrate that up as suggested and see if that does help at all. I wouldn't start with Lyrica at all until you see how the medication you are already taking works, or doesn't. Give that a decent amount of time to see if it can help at all. Of course if it doesn't work, try the lyrica.
As you said you won't know which drug has made any difference pain wise if you start taking two (or more) simultaneously No one needs to be taking any medication if it is not helping.
The lyrica is helping me a bit so far Kathy, It mainly is having an effect on how heavy and weighted my pelvis and legs feel, especially later in the day. Hopefully it can make a difference to pain too soon but just that lighter feeling is good.
Btw, I did listen to a blog talk radio show ages ago when a physician did say that topical medication worked really well, which is something that I wouldn't have thought was true but his explanation on the show was convincing. Unfortunately I forget who this was and what he actually did say,but that was the jist.
My Mam is fine as she is being well taken care of in the nursing home Kathy This has made such a difference to my Dad especially, he just couldn't cope anymore. It's not what anyone thought would happen but it has definitely been the best move for everyone.
Hope you do get your medication sorted out but it looks like it will be a slightly time consuming exercise but at least you have tackled the problem sensibly.

Take care,
Helen

[calluna]

I agree with what Helen says - that's really quite a mixture you've got there! Sorting that lot out is going to take a specialist. I can appreciate your reluctance now.

The baclofen does sound like a good idea, titrating that up as prescribed - yes. Lots of people have been helped by that. See if it helps you, give it a good shot.

With regard to Lyrica... I think I may have hit a wall of some sort with the Lyrica/pregabalin at 100mg twice daily - I took the dose up by 25mg on Friday hoping to deal with breakthrough pain, and I think it is a step too far. I feel so stupid and I just don't feel like myself at all I'm sure if I took one of those tests to check whether someone is confused - you know, who is Prime Minister, what day is it, remember these three words and I will ask you again in ten minutes and then again in half an hour - I'd come out as rather mixed up. I don't feel safe to drive. I went to see one of the GPs today, she says hang on in there, make sure I've given it a proper shot because the side effects may all wear off by this time next week, and the pain relief may kick in. She's right, of course. Ho hum.

My mum is in a care home too, she has a form of dementia - she think that her room there is a little private apartment, and that she is in perfect health and needs no care at all. She seems to forget all the times when she is ill and the nurses have to zoom into action. We never thought it would end up this way, it was all very sudden, but we never know what's round the corner, do we.

Hope all goes well when you meet the prospective new doc on Thurs!

[kathyd]

Hi Ladies,
Thanks for all your good wishes and thoughts.
I do enjoy talking with you!
Calluna I had posted a reply on this thread to you yestereday but for some reason my computer lost it again..the site makes me sign on a second time after I hit "submit", and after I signed on my post is gone! This happens once in awhile so guess I should either keep my posts short just in case, or PM you instead.
I am sorry your Lryica med causes side effects for you. I hope you can hang there and give it a chance if its helping your pain. I know its something you have to weigh-
benefits vs side effects. Tho I hear a lot about side effects I hear good things too so I want to start Lyrica and pls God... dump the awful meds Im on!

Thanks for your advice ... my suppository pharmacist feels that he can help me best with a ketamine combo rectal supp, but that will have to wait until I find a new pain doc! (as he needs to weigh in).
I will keep you guys posted.
Thanks so for the advice and good wishes. I will keep you in my thoughts as well!
Kahty

[helenlegs 11]

The disappearing post happens to me quite often too Kathy. It's because the site signs you out after a while if you are not 'clicking around' (I think anyway)
My solution to a longer post, or even a coffee making interval is to copy the whole post before sending. . .just in case I am logged out due to 'inactivity'.
It is then an easy matter to log in when prompted and paste your saved (copied) message when logged in again.
I kick myself when I forget to do it, especially as the longer posts do take time, utterly maddening! although some time you can just catch them and turn them blue after pressing send before they disappear forever.
Copying this in a sec due to lyrica increase and increased spaced outedness. I know what you mean Calluna. Weird!
I feel like I could easily go a bit mad, like I am skirting around the edge of a tiny bit bonkers. Some people would say that there would be absolutely NO difference in my demeanor but even my husband asked if I was feeling OK and he didn't mean pain wise I'm sure it will calm soon too, although I have to admit that I am on trepidation's edge anyway, as I am expecting the decision from the Upper Tribunal about my Industrial Injuries benefit claim fairly soon. I got a letter from them today and didn't dare open it!
My experiences with this lot over 4 years has not ever gone in my favor. They have been nothing but nasty so far.But, courage plucked, I read their letter which said 'we received your last letter, it's contents are noted', and that was it! Going in my 'no news is good news' file
c/Ctrl
Helen.
Yes I'm human. . . . thank goodness I remembered.

[kathyd]

Hi Helen
Good idea about the copy...it does make sense that the system logs you off while typing a long post,, but sooo maddening... will copy at various intervals or shorten my posts!
Hope that you get better news from the tribunal that you were writing to. Beaurocracy seems to reign worldwide.

Good luck with the Lyrica. I hope your body adjust to the side effects .
I may be joining you folks in taking it soon.
I keep hearing stuff about side effects, but if being sleepy/dopey is the worst of it, I'd take that to the tortuous pain.

For my pain I suspect hyperalgesia as disussed in other thread.
Thanks again for the tips...I can't tell you how many posts lost ...duh! Why didn't I think of copying as I went along?
Kathy

[kathyd]

Hi Folks
Just a quick question about Lyrica. I met my new pain mgmt doc today.. We liked him. He seems honest open and interested in helping. He seems smart. He had his own opinions on things and as we usually find with docs his opinions differed from other opinions I 've gotten. from docs!
He feels Lyrica could help and rx,d it adt 75mg..to start. (a goal of 200 300mg)
After the appmt, I realized I have plenty of 25mg tablets left from when I took them in January.. Back then I don't think I got beyond 50mg.. not sure.

I will call him to check on this, but I want to use my full bottle of 25mg before I fill the 75mg rx... I wonder if it would be wise to start with 25mg daily or 50mg,but his instruction was to start at 75mg (maybe due to my type and level of pain.. (which I can do by taking 3 in a day from my current bottle) Also what time of day'. he didn't say but he assumes I'll just be taking one 75mg pill
I dunno --afraid of urinary side effects ,,,,(but Im so frightened and hyer-aware; my muscles down there probably tighten in anticipation.
Eager to get started..Any thoughts would be appreciated.
thx! folks

[DoubleEdgedSword]

I don't want to be a downer, but Lyrica wasn't the golden ticket for me. The side effects have been numerous & troublesome for me. I don't want to discourage you from trying it if you & your doc feel that it might help. I started at 25mg twice/day, then went up to 50mg 2xd, then ultimately to 75mg 2xd.. I gained so much weight & felt spacey & sleepy all the time, even after waking & having an afternoon nap.

I seemed to be doing okay with it over all, until the breakthrough pain started last summer. My doc suggested I could go up to 300mg/day, but since I didn't like the side effects, I told him I'd rather taper off Lyrica & look into another solution to my pain.. I've been tapering down to 25mg 2xd now for quite some time. I've got about 8 pills left, & when I'm done them, that's it for me for Lyrica.

My doc said he really wasn't 'crazy about Lyrica' to start with, but thought it was worth a try at the time. I've now had 7 weeks of 'breakthrough' pain, so I'm upping my Cymbalta to 90mg once per day to see if that helps.

I hope you find the right dosage or combination of meds that will help you. It's a matter of trial & error to see what your body can handle, I guess. Best of luck & I hope you find some relief very soon.

Oh, and I've found out the hard way (!!) that once you post, go back to the top of the page & click on 'Board Index' rather than getting booted out! It works a charm for me!!

[calluna]

So glad you've got a doctor looking after you now, Kathy! I was hoping it would go well.

Ok, my thoughts.

Yes, eager to get started, I completely understand that. Scared of side effects, I get that one too. You could start with 25mg at bedtime, perhaps? And see how you feel in the morning.

Have in mind what this stuff actually is. It is basically pure neurotransmitter. Remember what that is - naturally produced by your body, in response to pain, telling the nerves to stop sending pain signals to the brain. Ok, a lot more complex than that really, but I am no biochemist and that's my way of understanding it.

Your doctor hasn't told you what time of day to start taking it because it isn't really important. If it mattered, he'd have said. So you can just go with what feels comfortable. It may make you a little sleepy at first, so bedtime is sensible, maybe. My own experience with side effects from pregabalin is that at low doses (which is what we're talking about here) is that they are only noticeable for the first day or two.

Don't be frightened. This is about taking control back again. This is about starting to find a way to manage the pain. There has to be a first step.