Fantastic Side Effects from Interferon Alpha 2-A

[mingler]

I'm only into my second week of Pegasys/Ribavirin therapy and have been extremely anxious about being able to tolerate the negative side effects of the therapy. After my first shot, I went into body rigid uncontrollable convulsions for about a half hour. With every day away from the shot I started feeling better and better, as I assumed the Pegasys was wearing away. After my second shot I expected a similar reaction, but there was almost none. Before starting treatment, I was exhibiting symptoms of extreme fibromyalgia, muscle tension and weakness, and random debilitating bone crushing pain impulses. For over 25 years I have taken minimal doses of Oxazepam (15mg daily) to control body wide tremors. Upon starting the treatment, I decided that I had to kick the Oxazepam to give me a clear picture of what side effects I was going to have to deal with. Ten days into the treatment I realized that many of my symptoms had been reduced to levels of more than ten years earlier.

My question:  What type of condition might I have that would also be aided by Interferon therapy. Should I get checked out for MS?

[NYgirl]

Mingler said: I decided that I had to kick the Oxazepam to give me a clear picture of what side effects I was going to have to deal with.


Maybe that is what the side effects are from because I"ve never heard of anything like this happening before (doesn't mean it's not possible) and I"ve never even READ anything in all this time of this being possible.

Interferon is one of the things they use for MS but I"m not sure why you would want to be tested for it...why in the world would a doctor prescribe such a test if you have no symptoms

Interferon is used for some forms of leukemia you wouldn't want to be tested for that as well?


I must be misunderstanding your question.

Have you spoken to a doctor about stopping your meds? I've never heard of such a thing sorry.

[Kalio1]

Wow sounds awful. Did you go to the doctor or to ER when you had these rigid, uncontrollable convulsions?? I can't imagine not being seen if that happened to me. I would tell the doctor about it now and not assume it is from tx, it could be some other condition that needs to be evaluated.Pus if it IS from tx, your doctor might want you off of it.
Gad to hear some of your previous problems are clearing up, ots of things cleared up for me within a month of starting tx.
good luck to you

[way]

My first shot was bad like you described, and I didn't pre-medicate to boot because I didn't think it would effect me. HA!
It was INTENSE shivers **as close to convulsions** as I think I ever want to come.I was too weak to lift a water bottle or to even call out for help!!

I was so scared to do my second shot and I was real prepared with extra blankets -heating pad etc. I took 800mg of ibuprofen about an hour after shot and nothing happened. I watched tv all night long. Every shot since (coming up on seven) has been as EASY.

Before TX I had bad symptoms of arthritis in my shoulder and hips and it went away after starting TX...I don't even take glucosimin any more and I was hooked on it along with hyluranic acid, cuz it was the only thing that worked to alleviate the pain.

[mingler]

Thanks for the quick responses. I'm starting to feel like I won't have to go this ignorant and alone.  

Yes, Way you're right. Extreme shivering was what I was going through. I have since found out that the Oxazepam I was taking is known to cause the very symptoms it's meant to eliminate. The body seems to be unable to pay attention to numerous symptoms at the same time. As my Pegasys wears off, I feel the tremors come washing back in. Right now I'm flopping around like a fish on the end of a line.

[way]

I'm really not familiar with the drug you're talking about, or it's uses.
BEFORE Tx, your doctor should have discussed all the meds you are on and the possible interactions etc. Some people here are on different pain meds for back problems etc and can prolly tell you more. Alot of people after begining TX won't take anything that's hard on the liver. My opinion is--it depends on your grade and stage of liver damage. I am stage 1 grade 2 and don't hesitate to pop 800mg of ibuprofen for my flu sx.

All I was saying is that ALL of my joint and bone problems resolved after starting on the pegasys/co-peg. Miracles can happen!!

BTW-your interferon (God willing) WON'T be wearing off. That's why the dang stuff is SO expensive, and why we take the riba everyday so --it won't wear off!!

[DoubleDose]

Decades ago I was prescribed Valium for muscle tension (diazapam), and ended up becoming dependent on the drug for almost ten years.  When I finally got off of the drug (after repeated failed attempts) it was a huge ordeal, and felt like I was having convulsions, electric shocks in the back of my head, and rigid, body-wide tremors, among other things.  I assume oxyzepam is very related to diazapam,(it is indeed, after researching it: it is a benzodiazapene, same as Valium!!!) and this class of drugs turned out to be one of the most difficult drugs ever developed as far as withdrawal.  Books were written twenty or so years ago about Valium addiction and withdrawal.

There is NO way you could do the TX and go through Oxyzepam withdrawal at the same time!!!!!  I would think that on top of being very dangerous, the combined side effects of tx, and the withdrawal symptoms of this tranquilizing drug would be way beyond human endurance.  I really thought I was going to die when I withdrew from diazapam (Valium).  They are very similar!!!!

See your doctor IMMEDIATELY and describe your predicament.  I would bet you are placed back on Oxyzepam right away, or taken off treatment, if you are determined to withdraw from the drug now.  You would also need huge assistance to withdraw from this drug alone...without tx complicating things!!!!  You have been on this drug for 25 YEARS!!!!  What were you thinking????

Please seek medical advice for this.  The addictive capability of this class of drugs is tremendous, and the withdrawal is truly hellish!   I know first hand!!!!

Look up all the literature on Valium withdrawal, and the books written about it!

DoubleDose

[Forseegood]

When I see posts like the one Double Dose just posted, it makes me realize how truly grateful I am that we have venues like this to gather and debate information....we are essentially watching each other's backs, and that's great to have along with our medical professionals...

Thank you for those threads, they were very interesting discussions, hope youre doing a whole lot better, you blow my mind you are such a nice man...

[cuteus]

mingler, does your dr know you have stopped this medication, no one should discontinue any medication without the dr's knowledge.

[OnAPrettyPoison]

Most folks are SLOWLY weened off that type of drug.  Please do check with your doctor.  I never had chills or fever from the interferon - no sides that I felt, just wanky blood levels and hair loss. Valium is really addictive - they had my Mom on it like candy in the 70's for stress.  She had a hard time stopping taking it when they decided it was addictive.   I hope you feel better soon!

[beamishboy]

how you doing? we haven't chatted ina longtime....where you at trxwise? sx's...?hope all is well
MINGLER-not much to add,definately see your med team!!,trx is tuff enough w/out the added withdrawals ..Goodluck, take care and the sx's of interferon will subside..

[can-do-man]

Hows tx been lately and your about done also right? Seem to always be late on your post. Got a laugh out of deanos bong.

Hope all is well guy

[OnAPrettyPoison]

How you been?  I can't post in the day time, so I catch up at nights, but not a lot of folks on.  I am on 48/48, almost done, or at least I hope so!  How you feeling, last I read you were doing pretty good?

[Metoohelp]

I hope your tx continues to be helpful for your other problems....I will be starting tx soon.

[can-do-man]

So your starting soon? Here's wishing you the best and sx free.

You'll do just fine. Take care

[Eisbein]

One the better books...an autobiography by Barbara Gorden
'Dancing as fast as I can', her addiction to valium, and her disasterous attemts of trying to kick the habit on her own.

Ina

[Eisbein]

One the better books...an autobiography by Barbara Gorden
'Dancing as fast as I can', her addiction to valium, and her disasterous attemts of trying to kick the habit on her own.

Ina

[DoubleDose]

Thanks for reminding me of the title.  I could not remember the name of the book yesterday when I posted.  When I was prescribed valium in the 1970's is ended up taking me six full months to withdraw, under the care of a doctor who specialized in valium withdrawal.  It was a nightmare for sure, and I do not think I have ever felt symptoms like that in my life, even during the worst of tx!!!  This felt much more electrical, convulsive and jolting, along with rigidity in muscle groups that made you feel like you were going to explode.  Not a fun experience.  My withdrawal may be the reason that I was able to endure so much on tx over a total of 33 months of high dose therapy without really being too intimidated.  It never felt as frightening as the valium withdrawal.

I hope you are well.

DoubleDose

[hippygem]

Ive been taking serepax for about 6 years now, i was on 120mg to help me sleep at night, and i have slowly got it down to 30mg at night, i really want to stop taking them, but im a bit scared of how my body is going to react, well, actually, how my mind will react is more like it...lol, i have depression, dont take anti-depressants (used to), I feel that I already 'over think', and struggle with everyday issues and life, if i go off the serepax, will that induce more thought activity at a higher pace, geez, am I explaining this properly?.
They say that anti-depressants are not addictive, yet when you stop taking them you have to ween yourself off them, to me, that means they are addictive.
Do you guys suffer depression, im not on the tx, im a relapser.

[beamishboy]

great good news! 48 of 48? dangummit you is done-congrats on hangin tough and kicking virus butt!! i am soo happy for you,keep us posted on the post-trx 'dancing on the dragon's grave '
can-do-man: i did shot # 36 on sunday,my procrit last nite and i am cruising w/out bruising so far this week...it is getting close & i am feelin as tho i am in the driver's seat,actually managed to do some constructive work & enjoy quality time w/ family-that is pure Gold!!!! Be Well

[Mister beagle bailey]

Forsee--  We have to watch each others backs as you know because the outside world won't.  That was a great post by DD and I know you would do the same.  How are you doing?

Prettypoison--  Wow, 48/48 yor almost done and I'm so happy for you.  Can't wait till you start feeling better and you will. :)

Beagle

[DoubleDose]

Just wanted to make sure you read the posts on this thread, and hopefully are now managing your withdrawal issues with your doctor.  If you have a moment, please do update us on your situation, and any feedback you may have gotten from your doctor.  Your situation is one to take seriously.

DoubleDose

[Eisbein]

I took some Valium during my college years, which is 25 years ago.
I took them strictly on test days, which was usually twice a week.
I was warned about the addictive properties, and told to read that book.
Now that put this drug into perspective.

During my once a year eye check-ups, it was noted that my eye pressure was heading up dramatically...from 14 to 22.
Doctor couldn't figure out why, kept asking me if I took any medications, but I kept saying no.
At home I looked up Valium sides, and sure enough, said it can raise eye pressure in susceptible individuals.
I stopped the valium at the end of college, and pressure returned to normal.
I figured I would be susceptible to glaucoma, and kept a close watch on it...sure enough, 20 years later I did.

I think doctors who prescribe valium on a long term basis, should do like my doc in NY did... don't write the presription until the patient has read the book. It surely kept me from abusing that drug.

Ina

[OnAPrettyPoison]

I am pretty excited about it, only dulled by an ear infection and guess what, more pills plus drops!  It has gone from ouchy ear to itchy ear, so I think it is getting much better.  Miss you, my favorite pup dog!

[Mister beagle bailey]

It sounds like your ear is getting better.  The itching means it's healing so that's good.  I know I haven't been on much but now you'll see this little puppy dog on more.

Beagle :)

[mingler]

Thanks for looking out for me. I'm seeing my doc tonight. He told me not to stop that drug cold turkey but I feel like my body is falling apart. If that's so, I wouldn't want to miss it. Right now, I'm in so much pain that it's hard to even move. The irony of the situation is that most of my job involves physical labor. I'm not sure what I'm going to do. My independant nature has made me keep going until I can't go anymore. That's why I finally decided to undergo treatment. That, and the fact that I have health insurance for the first time in many years.

[DoubleDose]

Good to hear that you are seeing your doc.  As I said above in my first post to you, stopping any benzodiazepene type drug cold turkey is asking for really horrendous problems.  Years ago I found that when trying to go cold turkey, and getting into the frightening side effects, I could pull out by restarting the medication.  Usually in a day or two things were back under control.  Eventually when I did successfully get off the drug, it took well over six months of gradual, miniscule reductions to do it...and even that was pretty tough!  I was only on small to medium dosages to begin with!!!  

Worry about your tx first, I would think.  I do not know if the drug might interfere with eradication or SVR rates, but you cannot do both at once!

Good Luck!

DoubleDose

[Don1023]

I had to comment...after reading your description of your first interferon injection I had to laugh. I remember that first injection. I remember walking the floor with socks, lbs of clothes and a ski hat on and I LIVE IN FLORIDA! My wife woke up, asked me what I was doing and all I could say was "I don't know."

I finished my 48th week last Friday and the side effects I experienced were fatigue, reduced appetite, flu systems, rash (really sucked). body/joint aches, dehydration and low red and white blood counts. Which I get shots for each Thursday - which gave me more "flu like' symptoms.

But, I made it and you can to. My viral load at start of treatment was 1.8 million. 4 weeks into treatment it was at 60 and now, undetectable.

If you (or anyone) has additional questions I'd be happy to answer them as best I can based on my experiences with PegasysPegasys/Ribavirin therapy.