Fibromyalgia explained as side to Tx

[franke566]

After continual complaining of total body aches my Neurologist started me on Lyrica 50mg 2x daily.  He still doesn't accept that the Interferon caused this but I guess to shut me up he tagged me with the new diagnosis.  Anyone else
being treated with Lyrica for joint pain and body aches etc. after Tx?  My Pulmonologist said No, you don't have fibro- you have side effects from Interferon!  She is the first M.D in nearly 4 years who even aknowledged to me Interferon has long lasting side effects other than my Psychologist who by the way said I wasn't crazy but maybe if I was I'd be better off-seriously.  I love the guy.

[pioneertown]

I am very late to this conversation but was searching for info on an interferon fibromyalgia conection. I treated with interferon 15 years ago as part of one of the studies (not effective) then treated again about 8 years ago when they added ribaviron (also not effective). Not only did I almost destroy my marriage because of the horrible psychological side effects, it destroyed my sex drive, it did NOT cure my hep C AND it gave me diabetes!!! It has also caused long term chronic pain which I lived with for years until I could not take it any more and went to a doc who prescribed not lyrica but cymbalta. The cymbalta has been great without the serious side effects of Lyrica. I can only assume that whatever autoimmune cascade the interferon started that caused my body to attack my pancreas and give me diabetes also caused the possible fibromyalgia. Whether it is actual fibro or a long term side effect of the interferon the treatment appears to be the same. I hate taking a med but can not live with the pain so.... Anyway, for those looking for another way to treat without lyrica you might try cymbalta-benefit-it also treats depression and insomnia which I bet most of our group have as well.

[franke566]

Please forgive me-I get so wrapped up in myself I and I forgot to say I am sorry you are having kidney Infections.  It is so odd how so many of us have different problems, same problems combinations of them and we all know in our heart of hearts the Interferon caused them.  Everytime I talk to my doctors and start blaming the Interferon I might as well be telling them I was abducted by aliens!  So I know how you feel.  You are the only person who responded about my lung issues.  Diagnosed with COPD and never smoked anything other than pot and I make a little doobie do me-I'm not a hog about it-just casually trying to stay calm.  I work in the fresh air-well, worked that is-all my adult life, then bam ,Tx and one sinus infection after another, wham, Bronchitis, bam, Pneumonia, Wham, COPD.  It's just mind blowing the run around some of us get.  It's a conspiracy man, I think I've been experimented on.  Gotta go get a Xanax!  Bye  

[franke566]

Hi, thanks, no, I am not diabetic and try to eat right.  small portions of meat like chicken breast and fish and plenty of steamed vegetables, beans, lentils, brown rice etc..  I was having some bathroom issues when I started drinking Danactive-probiotic-I mean like in that movie Dumb and Dumber only I was at a park in broad daylight with no bathrooms-close enough.  I just had no control.  Anyway I thought it was anything but the Dan Active because I thought that regulated things plus is good for us.  So the next day I drank another small bottle and 30 minutes later I was dumb again.  Yes I didn't know Lloyd Wright back then- I was searching desperately for someone who felt as I did so I could prove to the Neurologist I wasn't crazy.  I did take him some data from Shering and he wouldn't look at that either.  I think he ordered the B-12 just to humor me.  It was in the low range-barely.  I'm taking everyones advice and insist on that Hepatimax test next week.  thanks for your response-no, no cure alls for me and never danactive again either.
frank  

[merryBe]

that's why more labs to confirm diagnosis are done...so we don't end up on the exact wrong meds for one.
Glad she caught it in time, and yes I've read the lungs can be quite adversely effected as can the kidneys etc. but even my hepatologist won't give me the time of day when I mention the tx could be the reason for my 10 bladder and kidney infections...never had them before tx.

Are you a vegan, or are you on Metformin or another oral diebetic med. Or is your bowel normal and evacuating 3x per day?
B12 absorption can be interfered with by not enough protien in the diet, or by a sluggish bowel. A healthy bowel makes some B12 of its own...so if you are low you may need to adjust your diet. Liver patients are encouraged to have 3 BMs a day...meaning eat plenty of roughage and stag hydrated..or add lactulose if neccessary.
I think your one mistake may be giving a doc L Wrights stuff...they only respond to real medical studies and not to fringe people selling curealls.

mb

[franke566]

thank you, yes my Potassium levels are fine,  Electrolytes all good.  Thats the problem.  Well, not a problem, thats good but it has my doctors scratching their heads.  I did present with slightly low B-12 and my Neurologist has me getting a B-12 shot every month and that never did anything.  Two doctors.  One, my shrink or Psychologist with a PHD has said from the beginning that all of my problems were triggered by the Interferon, and the other, my Pulmonologist who treated me for pneumonia noticed on my follow up visit after getting out of hospital that I had just added Lyrica to my meds list and she hit the ceiling and asked why and I told her I was just given a new diagnosis of fibromyalgia and that is what the doctor is treating it with.  She said: You do not have Fibromyalgia! You have the side effects from the Interferon.  She also asked me about my work etc. and I told her I was a fishing guide and always worked outdoors-never smoked etc., and she said I have COPD and prescribed Spiriva, Advair RX and Xopenex to be used with a nebulizer then she said I have edema and said she would contact my Heart Doc. and put me on Lasix.  She also said the Lyrica was most likely the cause for the Edema and I need to stop taking it so I call my Lyrica prescriber and was told to come in today before stopping it.  He wants to see the Edema and his nurse said it is dangerous to just stop but I already have and it's been two days now since my last 50mg dose and I think the swelling in my hands and feet is going down and I am actually feeling a little better since the pneumonia.  Maybe it's this forum also because I don't feel crazy.  I am very concerned with my last labs but some of you good people have steered me to get tested again by a hepatologist and ask for Hepatamix test.  My arrogant Psychiatrist who I only see once a year has tried since Tx every anti-depressive known and the last he put me on is Prestiq.  My Psychologist who is also treating 5 other post Tx patients said (off the record) that the Interferon can mess with the Neurons and in rare cases-notice I said RARE-for all those who are about to treat or are Txing now and are getting your backs up; Rarely go on to present with various serious symptoms for life.  Anyway I've been tested for everything from Lymes disease to Lupus.
I think the doctor who gives me the biggest problem is my Neurologist.  He said everyone loses the sides after Tx.  Three years ago I took him a handful of testimonials from that hack Lloyd Wright and he wouldn't even look at them so I went to Shering Pl. and got some data from them about "some" patients who "Might have" developed permanent problems from the Tx but all the data isn't in yet.  He wouldn't look at that either.  Said these could be genetic.  Problem is, no one in my gene pool going back several generations had any of this (Paternal or Maternal) so I think it is safe to say that Interferon can trigger dormant flaws?   I'm pretty simple...a fisherman with just two years of college.  When a client steps on my boat he or she expects me to take them to where the fish are.  I can't guarantee their success and most normal people know this.  Their dis-appointment is also mine because the more I put them into the fish the more my reputation and business increases.   My doctors waiting rooms are full and everytime I leave with a new Rx I feel like a mullet.

[merryBe]

heard of electrolytes? They are essential minerals we cannot live without and the loss of any one of them can be life threatening.

Your doc told you it could be sides from the tx.

too bad she didn't add what the most common side is: it happened to me, and that's how come I know....but my docs didn't tell me what it might be I had to ask for extra tests and then ferret it out myself.

it's not fibromyalgia, it;s muscle pain caused by the chemo which has lowered the potassium levels.
One in every five people admitted to hospital have this deficiency.
It causes extrame muscle pain, and breathing and heart problems as well...
you mentioned your pulmonologist...so is your breathing difficult?
anyway, a simple blood test will tell if any of your electrolytes are low
and it is a COMMON occurance if you've been on chemo.
the longer the chemo, the more common, and the more vomitting or diarrea the more common.
So before taking Lyrica, or any drug which may be hard on your liver, find out you potassium level.
Pick up some pottasium at your store, health food store, or order it online.
Eat things high in potassium such as tomatoes, potatoes, bananas, raisins, eggs, etc.

For more info please just google potassium deficiency and you'll see I speak the truth.

Let me know how this turns out for you. I really don't think most folks know what to watch for when in comes to sides brought on by treatment...and the truth is, many doctors don't know either.
So please let us know if this turns out to be what the problem was...we'd all like to know.

mb

[portann]

Exactly. Maybe Jennifer or someone else will throw some light on this. It's out of my depth.

[franke566]

if Interferon "awakened" Fibromyalgia why would they Tx it further with the cause/awakened-caused, whats the difference?

[portann]

Good to hear you weigh in, given your experience. You have given Franke top-notch advice about how to proceed. I appreciate your point that interferon 'awakened' your fibromyalgia but did not 'cause' it, as Franke's title to this thread states.

Could you comment on this 2000 phase two clinical trial below?  For all I know, the trials ended in failure but I find it interesting that at least two phases were implemented. It makes me wonder what the scientists involved were thinking. What is your opinion?

Low Doses Of Oral IFN-Alpha Offers Some Relief In Fibromyalgia

AMARILLO, TX -- March 10, 2000 -- A just-completed Phase II clinical study conducted by Amarillo Biosciences, Inc., has shown promising results for sufferers of fibromyalgia syndrome.....The three-month study, involving 89 patients at four clinical sites around the United States, was designed to measure the effectiveness of low doses of orally administered interferon-alpha (IFN alpha) in relieving morning stiffness of joints, a significant problem for fibromyalgia sufferers...

http://www.wipo.int/pctdb/en/wo.jsp?wo=1999044632

[Bulldoggergal]

The only way to have Fibromyalgia correctly diagnosed is to go to a Rheumatologist and have them do the simple tests to see if it is truly Fibromyalgia.

I've had it for over 25 years...my mother has had it for over 35+...before they even had a name or would diagnose it.  I HAVE NEVER HEARD OF INTEFERON BEING USED TO TREAT FIBRO NOR WOULD I EVER, EVER RECOMMEND IT!!!!

Gastro's are not the correct docs to diagnose and/or treat Fibro...neither are any other docs except for the Rheum docs...there are soooo many options, besides Lyrica, to treat Fibro, including many "off label" uses of medications like antidepressants, anti-seizure meds, etc....

You need to be correctly diagnosed by the appropriate doctor.

Yes, the inteferon/riba combo awakened my Fibro to the point of no return...but it does not CAUSE it.  Get to some Fibro support groups and get some good info there...

I feel your pain!  Good luck.
xoxoxo, Jennifer

[franke566]

I said Neurologist I meant Gastro then Neurologist

[franke566]

thank you Greatbird for asking that question.  I asked the same of my Neurologist.  The Neurologist said I will always present with a viral load after he rolled his eyes.  I was not convinced.  See, I am not too smart.  My PCP makes referrals after doing a liver Panel that comes back good so he refers me to a Neurologist who looks at the other stuff and says it's fibromyalgia so then I go to my Psychologist and tell him I want to have my viral load checked and it comes back>115.  I don't know what positive 115 means so I take that to the Neurologist and he says well sure, you will always have Hep C but it is within acceptable limits so you are okay.  I even went to Quest and said okay, what does the positive 115 mean? 115 thousand, 115 million?  What? and she says I don't know, I just draw blood.  So I go back to my PCP and he sends me to yet another Gastro who wants to look up my **s, do a echo and round and round we go.  In your opinion what does >115 positive mean-should I be concerned?

[Trinity4]

GB, good question.

Franke said:
"I had a Fibrospect done and I am F4 for fibrosis-97% Fibriotic but my ducts are as yet open and my liver levels are fine-viral load is> 115 and I don't have a clue what that means except the Gastroenterologist just rolled his eyes when I asked him about that and said not to worry about it.  I really have a hard time because I fired my original Hepatologist and even called him a quack so I shot myself in the foot there because that is in my record.  I was angry because he didn't tell me that some people (rare) never get
over the side effects.  In fact he told me the side effects would terminate after treatment-wish I would have recorded that.  Good luck. Oh, I had difficult HMO also-I am now on Medicare but back then I fought my HMOs for everything and they always gave in -the problem is staying on the doctor-getting him to order the tests,  Frank "

[Trinity4]

Introducing Interferon back into your system isn't going to cure your fibromyalgia.  It's not like hitting an amnesiac over the head again to jog the brain and jump start the memory.  

If you feel interferon is the direct cause of your fibromyalgia (which no one can confirm) I would run away from interferon, not embrace it.  Stick with drugs especially developed for fibromyalgia, not something that may insult you autoimmune system even more.  

Sorry, don't see the logic in your thinking.

[GreatBird]

What confuses me from your posts, Franke, is how you can have a viral load and also be free of the virus?

[desrt]

My understanding of Lyrica is that it's not actually a 'treatment' (in the sense of addressing underlying causes) for anything except epilepsy. It works by slowing nerve impulses, so it can be useful in controlling symptomatic pain such as that caused by peripheral neuropathy. I think neurologists like to Rx it because it's a drug they're familiar with. If you decide to stop taking it, you need to taper offf under a doctor's supervision due to the risk of seizures.
You may want to reconsider the whole concept of doing more IFN to "un-do" your sides.

[franke566]

That is an excellent question and has me spinning-maybe you saved my life-no pun intended!  Maybe I need to go back to the beginning and take the Tx again.  If the Tx triggered the sides maybe it could un-do them.  I'll try anything!  Okay, I will make an appointment with Gastro and get back.  Thank you!  Wouldn't that be amazing?  It makes sense to me.  I only had Tx for six months-maybe I needed to go longer-maybe thats the key to this whole mess...maybe!

[portann]

Why don't you do a search for fibromyalgia and interferon?

If you're trying to suggest a causal connection between fibromyalgia and interferon to explain post-tx sx (and I don't know that you are), then my question is why is it used to treat fibromyalgia?

Whether or not Lyrica is more commonly prescribed,  interferon does seem to be used. My question is would it be prescribed if it causes it?

[franke566]

Now I am really confused because I went to Web MD and it said Lyrica is commonly used to treat Fibromyalgia and is the first drug approved by the FDA to treat it.  I just looked it up by going to Web MD typed in lyrica fibromyalgia and live search has that posted.

[portann]

Franke: "No, you don't have fibro- you have side effects from Interferon!"

I don't know how fibromyalgia fits into the autoimmune disorder spectrum. I thought that yes, tx can 'awaken' underlying autoimmune disorders or worsen pre-existing ones.

Fibromyalgia, though, is treated with interferon, so I'm not sure how that plays out.