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Dr Trevor Marshall
Research Team
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Posted: Fri May 15th, 2009 18:10 |
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I know that many of you are taking Lyrica (Pregbalin), and I recall seeing mixed results. Those on Lyrica are not always having a trouble-free recovery (as far as I recall, but I may be wrong )
Canada has just approved Lyrica for Fibromyalgia pain, a study found it is active in Restless leg Syndrome, and it has been found to reduce hot-flushes.
These are all Th1 syndromes. There seems little doubt that this drug affects Th1 disease, but in which way? It is a beneficial drug, or is it counterproductive to maintaining stability and/or recovery with the MP?
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BARNEY
Moderator
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Posted: Sun May 17th, 2009 01:11 |
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Trevor,
Last time I went to my doc, I met a lady taking Lyrica for FM and when I questioned her about it, she said she has to have a blood test every so often to make sure all is well with it. Sounded dangerous to me.
I talked w/ her about doing MP, but she was all okay with what she was doing.
I guess we can't win them all.
HANG IN THERE, WE WILL MAKE IT!!!BARNEY
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64jointsarc77skinsarc80lungsarc81asthma/migranes
95rkidneyremoved(cyst)diabetic/gallbremoved,96
totalhyst(cysts,endom)01fibro,Benicar40/20mg&xtra
as needed,stage5,
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Lee
Member in Phase 3
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Posted: Sun May 17th, 2009 02:12 |
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I have mentioned taking Lyrica and yes it really can stop hot flashes etc along with IP. When I first started it taking 3/ 75 mgm per day it stopped IP all together ....completely! I was afraid I was gettting no where on the MP so I stopped it. Soons after that I got my first really bad cold/flu ... I have had one in years! Strange! I was very sick! Then DH was laid off and changed jobs and insurance. I began living alone and stopped sleeping. I found 1/ 75 mgm cap in the late afternoon would help me sleep through the night!! Knowing it could interfere with IP I use this 1-2 times per week ONLY! New insurance has denied this drug twice stating I have NOT tried enough other meds before Lyrica?! My doc will not prescribe opoids except for a few hydrocodone. They do not agree very well with me? I tried Neurotin years ago and found it way too sedating! Not so with the Lyrica. I have had two docs now tell me Lyrica is fine and alot of the hullaballo about it is the price ....it is expensive and it is nothing but a newer form of neurotin in a funny little capsule?! The insurance company is making it complicated due to price. But seeing what it did too me at regualr doses makes me think this is a medicine we need to study alot more ... Lee
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2003 SARC w/COPD Hyper-Flex Fibro.
D ratio-2.13 Ph1-2/05 Benicar| 4/05 PH2| 06 Ph3| 2008 D25-9.7 silymarin/sunlight w/noirs
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BARNEY
Moderator
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Posted: Sun May 17th, 2009 02:42 |
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Lee,
Try 60mg Benicar about 1 hr prior to going to bed and move your regular Benicar 40mg/4hr also and see if you don't get plenty of sleep.
(Sorry, this is Lyrica's post). Just can't stop thinking MP.
HANG IN THERE, WE WILL MAKE IT!!!BARNEY
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64jointsarc77skinsarc80lungsarc81asthma/migranes
95rkidneyremoved(cyst)diabetic/gallbremoved,96
totalhyst(cysts,endom)01fibro,Benicar40/20mg&xtra
as needed,stage5,
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West Tennessee
Member in Phase 3
| Joined: | Thu Aug 24th, 2006 |
| Location: | LOVELAND, USA |
| Posts: | 77 |
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Posted: Sun May 17th, 2009 06:08 |
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Hi Dr.Marshall
PH3 Benicar40mg q 4hrs, Z125mgq10days, Mino100mgqod, C150mgqod for(300days). Z250mgq10days with one antibiotic combo of C150mg,M100mg, BDSqod, D150mgqod for 6months as of today.
Just wanted to give you another perspective from a 3yr MPer. I started Lyrica 4months before I was even aware of MP. At that time I was at the end of my rope and money dealing with multiple health issues. Being an RN , I just kept pushing every doctor until (at my request ) I had a Western Blot Test done which came back positive for the bacteria associated with Lyme disease. Finally a diagnosis!
At that time I had constant burning on the soles of my feet, and a burning sensation on several areas of my back. I was prescribed Lyrica 100mg three times a day. As I know now, I was having several other IPs going on also. (please see my postings for other IP symptoms). The only IP that I am aware of FOR SURE that was relieved, was the burning and stinging of ALL my body parts with in a few days.
The Lyrica did nothing for my CFS, mental fog,muscle twitching, joint pain, insomnia, and anxiety to name a few.
I started the MP in August 2007. By reading other's postings, I would say I was able to herx regularly, with fairly good control. I made the same mistakes along the way that others have made, and had to use all things available to me to get my IPs under control and more tolerable.
My main side effect from the Lyrica for me was fluid retention, which added up to an extra 20lbs on the scales. Over the last 6 months I have been weaning myself down slowly, OH so slowly. That is another disadvantage to the drug, you can't just stop suddenly. My main symptoms were irritability, a sudden burning sensation on my back, but never my feet again (so far). The good part was ---the 20 lbs came off and has stayed off as long as I take 75mg and some days up to 100mg a day. Pain medication does help the burning sensation, but taking a Lyrica had to be better than becoming dependent on pain meds, until I read today's posting by Dr Marshall on "Lyrica Alert".
Dr. Marshall, I feel I have come along over the last (almost) three years with my body's healing just as you planned for most of us to do on the MP. Obviously I have no proof that the Lyrica slowed or interferred with my progress on the MP.
I just wanted to give you a subjective view of my progress. My doctor obviously wants me to take the higer dose of Lyrica as oppossed to more frequent pain meds. I feel the answer may be the lesser of two evils for now. I will be watching for possibly more information as you are able to gather related to "Lyrica" and The Marshall Protocol.
Thank you for always watching out for us,
West Tennessee
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Lyme Ph1Aug06 Ph2Dec06 Ph3Feb07 25-D 7/2009 13.0 ng/ml Noirs all outings
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tigerEye
Member in Phase 1
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Posted: Fri Jun 12th, 2009 22:34 |
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| A newer Fibromyalgia drug is "Savella" or milnacipran HCI tablets. Is this contra-indicated for the MP as well, My Dr. refuses pain meds and just gave me a sample of this. Most of the pain meds make me extremely nauseous and I cannot tolerate them. When asked if there were another type of drug to relieve the pain, I get the Savella. I do have Fibromyalgia which has not improved on the MP although the Sarcoidosis is much much improved, the only sign of it now is the ACE of 93. Please, need advice.
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Catherine
Sarcoid~ Lungs, Lymph Nodes, Neuro? ~Fibromyalgia,Costochondritis, TMJ,CFS 1996 ~ before MP: plaquenil, methotrexate, prednisone; 2003> Benicar Only MP, Benicar 40mg ~ Mino q48hm 2004; Noirs,diet. Completed Phase 2 Fall 2008,Restart PH
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Dr Trevor Marshall
Research Team
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Posted: Sat Jun 13th, 2009 02:34 |
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The opioid Hydrocodone (Vicodin) does not interfere with progress on the MP, and seems well tolerated by the cohort.
IMO, Physicians need to pay more attention to the needs of their patients and worry less about the extra paperwork involved. The newest physician guidelines on pain management instruct that pain must be treated, and if opioids do the job, then opioids should be used.
Opioids are regulated because they have typically been given to people who have never recovered from their disease. Now that we have the MP, where patients eventually recover, and no longer need the opioids, addiction is no longer a problem.
Here are links to some pain management guidelines:
http://www.guideline.gov/summary/summary.aspx?doc_id=9744&nbr=5217&ss=6&xl=999
http://www.anes.ucla.edu/pain/painmgmtinpatients.htm
Thanks to everybody who is reporting here, I really appreciate your help. The more data we get the clearer the picture will become.
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tigerEye
Member in Phase 1
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Posted: Sat Jun 13th, 2009 04:54 |
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Thank you, Trevor, so nice to hear from you. I was given hydrocodone> severe nausea, same for morphine. So, perhaps I cannot tolereate that type of pain medicine. But, maybe there is something else Will Savella disrupt the MP, I hope not because I have begun the pack of medication after an especially difficult time with severe pain.
I wish I could say that I no longer have the fibromyalgia and feel like a success story, but I can't say that. The Sarcoidosis, absolutely, no SOB, no chest pain, no eye inflammation, no neurological problems, no skin rashes. Success for Sarcoidosis !!!!! I have completed Phase 2, took a break for family medical reasons, now Re-start Phase 1. I believe in the MP and I will continue until I succeed and no longer have the pain and other problems of FM.... Would love to hear from others with Fibromyalgia who have recovered. I will do whatever it takes.
Last edited on Sat Jun 13th, 2009 05:36 by tigerEye
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Catherine
Sarcoid~ Lungs, Lymph Nodes, Neuro? ~Fibromyalgia,Costochondritis, TMJ,CFS 1996 ~ before MP: plaquenil, methotrexate, prednisone; 2003> Benicar Only MP, Benicar 40mg ~ Mino q48hm 2004; Noirs,diet. Completed Phase 2 Fall 2008,Restart PH
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Russ
Member in Phase 3
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Posted: Fri Jul 3rd, 2009 21:47 |
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Is there a current thinking on whether or not Lyrica can be taken regularly without stopping or significantly slowing progress on the MP?
I deal with neuropathic pain in the nerves in the area of my right eye and the optic nerve which makes any type of concentration extremely difficult. I was prescribed Lyrica by a neurologist before finding the MP but never filled the prescription. As I hit the three year mark on the MP and start thinking about ways to "have a life" while I complete the MP, I am wondering if Lyrica might be an option for me.
Thanks!
- Russ
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Lyme, MCS | Phase 1: Jul '06 | Phase 2: Nov '06 | Phase 3: Jul '07
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Dr Trevor Marshall
Research Team
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Posted: Sat Jul 4th, 2009 04:27 |
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Russ,
There have been one or two reports of significant problems when trying to wean, which worry me. Otherwise, there really hasn't been a lot of data one way or the other, as it is a pretty new drug (compared with time to recovery on the MP).
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Russ
Member in Phase 3
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Posted: Sat Jul 4th, 2009 04:35 |
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Thanks as always Dr. Marshall. I think I will try some other things (lowering abx, etc.) before thinking about Lyrica.
Incidentally I do not tolerate hydrocodone well. It is weird how some folks with TH1 do not do well with opioids.
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Lyme, MCS | Phase 1: Jul '06 | Phase 2: Nov '06 | Phase 3: Jul '07
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dizzyblonde
Health Professional
| Joined: | Wed Feb 25th, 2009 |
| Location: | Australia |
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Posted: Sat Jul 4th, 2009 09:24 |
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Hi Everyone
My two cents worth for Lyrica - this is the drug that lead me to MP. I cannot remember Christmas Day as a result of taking the recommended dose of this. For about a week it was like I could finally 'feel' my nervous system instead of being numb, and had a lot of burning pain. It is the type of pain that I call an "ice burn". If anyone out there has ever had their finger on an ice block for too long, they will know what I am talking about.
Please be careful. As with everything, this is just my own personal experience. There has to be a balance somewhere between some kind of quality of life as opposed to any downsides of medications. Anything that I have to "wean" off starts raising red flags immediately.
DB
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phase 1 30/12/08. Phase 2 lost start date ? mid feb 2009! FM, 5 x MVAs, beginning CFS, peripheral neuropathy, ticks, depression, endocrine issues, irritability, anxiety, currently on phase 2, level 3, 100mg mino cycle 2.
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Russ
Member in Phase 3
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Posted: Sat Jul 4th, 2009 19:04 |
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| Thanks Dizzy. That's weird that Lyrica caused nerve pain for you as I thought it was supposed to relieve nerve pain. Or maybe not so weird if one understands the general futility of trying to treat symptoms with drugs without addressing the root cause.
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Lyme, MCS | Phase 1: Jul '06 | Phase 2: Nov '06 | Phase 3: Jul '07
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dizzyblonde
Health Professional
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Posted: Sun Jul 5th, 2009 04:12 |
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For me the FM used to progress from pain to full bown numbness. I would be able to feel pressure in the area and that's it. Ironically, that's when I knew that I was really in trouble. So for the Lyrica to produce nerve pain was the Lyrica doing it's job. It also just did so much more than that. I really did not like how I felt. I am only 37 years old and just found it so frightening to be having so many of these types of issues at such a young age. I was still doing outdoor commando style training and was fit. I ate well and did everything right. Just my body kept getting worse.
I am having some pretty bad herx at the moment that is at the intolerable point. I have lost most of my co-ordination, will pick up something then just drop it without intending to, losing words or using an inappropriate word, very tired and dizzy. It is just bizarre. I think that I will be at this level 3 100mg cylce for a while by the looks of it. Loads of the same type of stinging nerve pain. I feel like I am permanently carrying my shoulders scrunched up towards my ears. Benicar is my best friend right now!!! I am sure that a lot of you with fibromyalgia know what I am talking about. The psych that I see for the narcolepsy has agreed to re run my Spect Scans at the end of this so that they can do a pre and post treatment comparison. A picture tells a thousand words!
DB
Last edited on Sun Jul 5th, 2009 04:14 by dizzyblonde
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phase 1 30/12/08. Phase 2 lost start date ? mid feb 2009! FM, 5 x MVAs, beginning CFS, peripheral neuropathy, ticks, depression, endocrine issues, irritability, anxiety, currently on phase 2, level 3, 100mg mino cycle 2.
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Russ
Member in Phase 3
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Posted: Sun Jul 12th, 2009 15:15 |
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I have found that OTC Aleve (Naproxen) works very well at relieving my neck/spinal pain and Wikipedia says that Naproxen is commonly used to treat pain and inflammation caused by ankylosing spondylitis and rheumatoid arthritis. Apparently it works by inhibiting the COX-1 and COX-2 enzymes which in-turn inhibit the body's production of prostaglandins. Prostaglandins (a subclass of eicosanoids) are listed as being responsible for sensitizing spinal neurons to pain, which is probably why Aleve helps my neck pain so much, but they are also responsible for a ton of other functions that seem pretty important (see here). So I'm guessing this is not a drug one should take with any kind of frequency while on the MP but thought I'd ask if there were any thoughts on it's use or any experience with it. Thanks.
- Russ
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Lyme, MCS | Phase 1: Jul '06 | Phase 2: Nov '06 | Phase 3: Jul '07
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jlunn247
Member in Phase 3
| Joined: | Fri Jul 27th, 2007 |
| Location: | Michigan USA |
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Posted: Sun Jul 12th, 2009 16:08 |
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I have tried lyrica i think extra benicar and ibuprofen helped me better in stage 3.
i am getting off of the big pharma merry go round during stage 3.
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Sarc/lungs/joint pain TMJnerve pain 125D56 25D16 Ph1Mar07 ModPh2Jun07 Ph2Nov07 PHase3Feb08 albuterol
dark sunglasses hands & face exposed. Medium herx
mostly.june09
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Joyful
Board Staff
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Posted: Mon Jul 13th, 2009 00:01 |
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@Jlunn: yeah getting OFF is sooooo much my heart's desire as well. 
@Russ: Aleve, and other COX-1/2 inhibitors do have a lot of effects on the body and would be best to avoid. It never worked for my kind of pain.
Personally I reach for Advil when I have the occasional intolerable (like after the root canal), it probably should be avoided as well. At one time I found research indicating that Olive Oil also has COX-2 inhibitory effects. Interesting, but not that significant.
Last edited on Mon Jul 13th, 2009 00:02 by Joyful
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Lyme?1980 Lyme/Babs/Bart?05 CFS?06 | Start 125D(50) 25D(32) Jun07 | Ph1Jul07 ModPh2Sep07 Ph2Feb08 Ph3Aug08 | Latest 25D(9) Apr09 | ABC of MP
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jcwat101
Research Professional
| Joined: | Tue Jul 20th, 2004 |
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Posted: Tue Jul 14th, 2009 01:05 |
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I probably use tylenol more than anything, though I don't use it a lot. Of course, it is generally preferable to adjust the MP antibiotics and not use other drugs. But I think a lot of people have likely used some Aleve and Advil off and on and done O.K. -- so they aren't really incompatible with the MP, if one really needs to use something.
Joyce
PS Here http://mpkb.mp-dev.com/doku.php/home:othertreatments:pain_medication, Trevor says that opiates and tylenol are preferable to NSAIDSLast edited on Wed Jul 15th, 2009 05:33 by jcwat101
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20 yrs with CFS/FM/Lyme/IBS, food sensitivities; 1,25D/25D 8/04:64/11 http://SynergyHN.com
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