LymeNet Flash: I'm on Steroids ,as of today!

This is topic I'm on Steroids ,as of today! in forum Medical Questions at LymeNet Flash.

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Posted by EZ-E (Member # 6436) on :

I know many say don't, but I gotta get this flare up over. My left leg, doesn't work, for 2 weeks now! I let family pizz me off from 1000 miles away. That's when it started. Anybody know if Vantin(abx) doesn't mix with predisone & Valium? thanks E

Posted by Lymetoo (Member # 743) on :

I hope the dosage is SMALL and will only be for a few days...?? You'll need the valium once the prednisone kicks in!

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Lymetutu

Posted by cbb (Member # 788) on :

Do you have a Lyme Literate Med Dr (LLMD)?
Did he prescribe the prednisone?
Is the Vantin for Lyme disease?

Your dr would know if Vantin is OK with prednisone & valium.
Also, you could discuss it with your pharmacist.

All I'll say is be very careful with the steroids if there's any possibility that you have Lyme disease.
A temporary improvement may set you up for bigger problems later.
I recommend you take steroids ONLY IF it is with the supervision of a LLMD.

Keep in touch & let us know how you're doing.
We care.

Posted by liz28 on :

Burrascano's protocol says something about "permanent damage" associated with steroids and Lyme mixed together. Please be careful.

Posted by EZ-E (Member # 6436) on :

My LLMDs nurse, said they "prefer" I don't use steroids. The Vantin IS from him. I tested ecquivocal for Lymes-WB Igenex. The Vantin has done wonders for me in 3 months, Then this flare up happened.

My nuerologist gave me steroids, & valium.He diagnosed me with MS from Brain MRIs. I'm on full disability for MS. He doesn't know about my Lyme Doc, or treatments.

The pharmacist said abx & roids aren't a problem.

Thanks for the input, I'll keep y'all updated.

Posted by cbb (Member # 788) on :

As you may know, steroids suppress the immune system, so that gives the spirochetes a big advantage.
As the spirochete load increases, so does the severity of the Lyme disease.

In his Guidelines, Dr Burrascano says
"...more severe illness also results from weakened defenses, such as from severe stress, immunosuppresant medications, and severe intercurrent illnesses."

Under "Treatment Categories":
"Early disseminated - milder symptoms present for less than one year and not complicated by immune deficiency or prior immunosuppressive treatment."

"Late disseminated - present greater than one year, more severely ill patients, and those with prior significant steroid therapy or any other cause of impaired immunity..."

I recommend that you discuss the steroids with your LLMD - ASAP.
He would be the best one to advise you concerning steroids and how that could affect the results of treatment for Lyme disease.

Posted by treepatrol (Member # 4117) on :

quote:
Originally posted by EZ-E:
I know many say don't, but I gotta get this flare up over. My left leg, doesn't work, for 2 weeks now! I let family pizz me off from 1000 miles away. That's when it started. Anybody know if Vantin(abx) doesn't mix with predisone & Valium? thanks E

Check Interactions1 potential interaction was found for the drugs you selected.
You searched for interactions between the following drugs:

Prednisone Oral
Valium
Vantin
Add or Delete Drugs

Start Over with a New List of Drugs

(Note: Not all drug interactions are known or reported in the literature, and new drug interactions are continually being reported. This information is provided only for your education and for you to discuss with your personal healthcare provider. )

ALCOHOL may interact with DIAZEPAM (in Valium)

Although the cause of this potential interaction is not fully understood, intolerable or otherwise undesirable side effects may occur when diazepam is taken with alcoholic beverages or alcohol-containing products (such as some cough syrups and elixirs). Potential side effects include drowsiness, dizziness, blurred vision, headache, and nervousness. Because the combination of diazepam and alcohol (ethanol) may impair your judgment and/or reflexes, it may be dangerous to drive or to perform tasks which require you to be alert after taking these together. It would be advisable to avoid consuming alcohol while you are taking diazepam. Discuss this potential interaction with your healthcare provider at your next appointment, or sooner if you think you are having problems.

This interaction is well-documented and is considered moderate in severity.

Steroids no no

Posted by Monica (Member # 224) on :

Just my opinion -- I think you are walking a slippery slope with one hand not knowing what the other is doing. It is possible your neurologist knows nothing about LD. In any event it sounds as if he knows nothing about your LD treatment.

Posted by Foggy (Member # 1584) on :

Talk to your LLMD.

Be careful. I know Lymies who were damaged by steroids.

Posted by EZ-E (Member # 6436) on :

Thanks for the concern all. I called my Lyme Doc, SEE ABOVE POST. Anybody got any ideas how to end this flare-up? I gotta walk. I'm 37 with a 2 yr. old. I started the steroids yesterday, we'll see?

Posted by david1097 (Member # 3662) on :

I also had them BEFORE treatment (IV) AND after initial treatment(oral). They helped but.... all it seemed to do was push the symtoms into a bigger pile that hit after the steroids stopped.

There have been a number of publications about the simultaneous use of steriods and antibiotics to minimize very bad symptoms so what you are explaining appears to have been used before. The trick appears to be to have both anitbiotics and steriods, never steroids alone. For me the symptoms cleared up within a day after start. They them came back withing a couple after starting.
As noted, I was not on antibiotics at either time.

Posted by Lymetoo (Member # 743) on :

If the flare up is from a herx, the best way to stop the flare would be to stop the abx for a day or two. Much better idea than taking steroids, though I will say I've taken a short course of steroids without terrible consequences.

The emphasis should be on SHORT....as in less than one week....and at a LOW dosage. What is your dosage, btw?

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Lymetutu

Posted by EZ-E (Member # 6436) on :

The flare up was from getting mad, for a week strait.....family deal from 1000 miles away.. Stupid me.
My predisone dosage is:
60mg-3days then
50mg-3days
40mg-3days
30mg-3days
20mg-3days
That's way more than they've ever given me,not sure why.....oral.....

I've had 3flare ups last year, 3 or so months apart.....causes IMO..1st) heavy exercise ,terrible eating habits.....2nd)Heavy Supplements, any speeding up, & I feel bad....3rd)Took CS 3weeks, with huge success( that's when I started investigating Lyme), then sprained ankle bad, & never got it back..after 5or 8 days of steroids the flare up broke......Went to the Lyme Doc then....My eyes are hugely improved(perfect most of the time), other improvements too.
My leg draggin' is my only flare up symptom now, but it's bad....
thanks all

Posted by bpeck (Member # 3235) on :

EZ:
These are huge doses of corticoid steroids, so you're pretty much going to be guaranteed of pain releif.

But there may be a price to pay for these high doses... called "aseptic necrosis of the femur' . Bone death- circulation is shunted to the head of the femur.
See this site for an explanation: http://vasculitis.med.jhu.edu/treatments/prednisone.html

While they cite that it usually takes some time for this to occur, individual differences may predispose one to have it happen sooner, if the doses are high enough.

Your Dr. and you should weight the risks.
Did he or she explain this possible side effect?
Barb

Posted by Lymetoo (Member # 743) on :

I agree....those are HUGE doses of steroids! I would never agree to taking that much unless i was in danger of dying. I'm serious.

Even half of that is too much in my book. Good luck.

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Lymetutu

Posted by EZ-E (Member # 6436) on :

10-15% improved today(3rd)......It's function, not for pain. hopefully 5 days or so, & i'll quit em...also, I'm a 270lb guy(50 overweight)...thanks all....

[This message has been edited by EZ-E (edited 04 February 2005).]

Posted by duramater (Member # 6480) on :

Hey EZ-E:

I'm agnostic when it comes to steroids b/c they have saved my life with my asthma several times. At the same time, without knowing I had a Lyme infection, they let the bugs get in my skull a lot easier and I ended up with a raging case of meningitis. They've got pluses and minuses which you and your doc have to weigh.

BUT DON'T JUST STOP THEM! You've got to
t a p e r them. Very important otherwise you'll kick your adrenal gland's butt and wind up in a world of hurt. Unless you are at 10mg or 5mg/day you can't just stop. Decrease quicker, don't spend as much time on any one dose, whatever, but no cold turkey stoppage, okay?

Prednisone queen (and in LOVE her with steroid inhaler that lets her breathe!)
~DM

Posted by LymeinME (Member # 6849) on :

3 weeks ago I saw a "top of his field neurologist" and just got results back last night. My hands & legs, face & tongue all have sensation.

Blood tests came back I have auto immune issues. He is knowledgable in lyme & has recommended steriods for up to 3 months.
He said that as long as I keep doing antibiotics I'll be ok. He will be sending his recommendations to my LLMD, and we'll see what he says.

I've done research that says that IVIG works the best for this, however, is expensive, insurance company would balk. I wonder if he's prescribing this to make the (non)insurance company happy.

Posted by EZ-E (Member # 6436) on :

Yep! Gotta breathe. I gotta call from the nueros office yesterday, offering me 1 of 2 new MS drug studies. I asked her about the big dose they prescribed, & she talked about the weening off the roids too. Yeah, heck, at worst I can be a pro-baseball player....lol.......

Posted by Lymetoo (Member # 743) on :

quote:
Originally posted by LymeinME:
3 weeks ago I saw a "top of his field neurologist" and just got results back last night. .............
Blood tests came back I have auto immune issues. He is knowledgable in lyme & has recommended steriods for up to 3 months.
He said that as long as I keep doing antibiotics I'll be ok. He will be sending his recommendations to my LLMD, and we'll see what he says.

You're REALLY playing with fire if you agree to steroids for 3 months! I wouldn't trust a neuro to serve me oatmeal. But that's just me.

I'm rather prejudiced against them since they've done stupid things to me and to other Lymies around here.

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Lymetutu

Posted by LymeinME (Member # 6849) on :

quote:
Originally posted by Lymetoo:
You're REALLY playing with fire if you agree to steroids for 3 months! I wouldn't trust a neuro to serve me oatmeal. But that's just me.

Thanks Lymetoo, just checking around for experiences. I can't seem to find any studies of Lyme and steriods. Does anyone know of one?

[This message has been edited by LymeinME (edited 05 February 2005).]

Posted by Foggy (Member # 1584) on :

6 days of Steroids reeked havoc for a fellow Lymie who was on abx. LT is right, be careful, you're playing with fire.

Neuroducks and Pain ducks are the worst when it comes to this liberal use of roids for Lymies.

Posted by Lymetoo (Member # 743) on :

Nope, don't know of any studies, just personal experience. There may be studies...I just don't know.

You can click on the little blue word "search" in the upper right hand corner of this page and type in "steroids."

You'll probably get hundreds of threads on it. It's discussed regularly here.

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Lymetutu

Posted by hatsnscarfs (Member # 6562) on :

I took 60mgs day of prednisone for 1 week when I first got Bells Palsy & Lyme diagnosis.

Of course I learned later that steroids are not a good idea with Lyme.

When I took the prednisone all my pains went away including various knee & hand injuries (ski mishaps) other joint pain etc. By the end of the week I felt like I didn't have any joints. I didn't regain full feeling in my legs and feet for approx. 5 months.

My chemical sensitivities which had been out of control for many years got under control quickly.

A Dr. friend told me to enjoy my pain free week because all my symptoms would come crashing back after I stopped the prednisone. To my amazement they did not come back. My knees still don't hurt like before and my allergies and hypersensitivity to smells are the best they've been in at least 10 years.

While I am concerned that the steroids made the Lyme harder to treat I am glad to have had many positive and lasting effects from the one week treatment. The Bell's Palsy recovery has been very good. My face looks totally normal although it still feels strange to me.

I had a disastrous experience with a cortisone injection for a strained ligament and am generally opposed to steroids. This time though they may have been the right thing for me.

I was surprised that my Dr. did not recommend tapering my dose. After I did some research I learned that tapering is not necessary for a short course of treatment. I did halve the last few doses though and spread them out over another few days.

I'm mentioning the tapering so you will know that it is possible to stop taking the stuff if you change your mind early on.

h&s

Posted by TheCrimeOfLyme (Member # 4019) on :

My daughter has lyme, and asthma ( and some coinfections)

When her asthma flares the child CANNOT breathe. I give her her steroids, she NEEDS them. I also am very very ill with something in my lungs right now and a big hefty dose of steroid sounds good.

I wouldnt use them unless you couldnt BREATHE.

Posted by Lyddie on :

Lymein ME, your neurologist prbably tested your ANA and found tit to be positive, then told you you have "autoimmune issues," and so prescribed steroids.

Lyme can cause a positive ANA, believe me. Three members ofmy family have pos. tests for Lyme ad pos. ANA's. This probably means that we ahve some autoimmune stuff going on triggered by Lyme. These tests improve w/abx but you ahve to be patient. Your neurologist wouldn't know anythign about this, but any Lyme doctor will tell you this.

Plaquenil is a much better drug for you for this situation. Like steoridcs, it dampens the immun system, but gently, adn it is an anti-inflammation drug. If taken with Biaxin or Zithromax it helps the abx work too.

Most rheumatologists treat with Plaquenil for autoimmune stuff like rheumatoid arthritis or lupus. They only go to steroids in extreme, dangerous situations, I ahve been told.

Sounds like this neurologist not only doesn't know the association between LYme and ANA's, but also has a knee-jerk steroid response which is old-fashioned and inappropriate. I'm not a doctor, just going by our experience.

Posted by EZ-E (Member # 6436) on :

I'm problably another 10-15% better today(4th), already!! YeeeHaaaa!!

Posted by LymeinME (Member # 6849) on :

quote:
Originally posted by hatsnscarfs:

While I am concerned that the steroids made the Lyme harder to treat I am glad to have had many positive and lasting effects from the one week treatment. The Bell's Palsy recovery has been very good. My face looks totally normal although it still feels strange to me.

Hatsnscarfs, thanks for replying. I too had bells almost 4 years ago when my whole nightmare started. I took the steroids for 1 week, can't remember the dosage. I also recovered from the bells, but my face also got a weird sensation, sunburned stretched like with areas of intense tingling. This happend after I took the steriods and sometimes wonder if it was the steroids that did this.

Now almost4 years later, I still have the facial sensation, but it spread to first my left hand and foot, then to my upper back, and most recently to my right hand and foot. I also have quite a bit of pain. That is why he is recommending the steriods.

I haven't seen the report yet and he was going to be in touch with my llmd. I was actually hopeing that he would recommend IVIG therapy, there's been good success with this. But suspect that we have to try the steriods first because of insurance purposes. I should call the doc back and ask him about that.

I'm also supposed to start iv anitibiotics, can't wait for that experience.

[This message has been edited by LymeinME (edited 05 February 2005).]

Posted by LymeinME (Member # 6849) on :

quote:
Originally posted by Lyddie:
Lymein ME, your neurologist prbably tested your ANA and found tit to be positive, then told you you have "autoimmune issues," and so prescribed steroids.

Lyddie, I've been on plaquinil for 4 months, for treatment of babesia. During this time is when the sensation in my extremedies got worse. I was taking 200 mg 2xa day

Posted by EZ-E (Member # 6436) on :

I'm walkin' about 5 or 10% better today(5th). I treadmilled 8 minutes very sslowly, 2 minutes at a time, with 45 sec. breaks in between. The wife had to help me in and out of the gym, but just cuz I don't have a 3-leg cane... Slowly but surely!!

Posted by EZ-E (Member # 6436) on :

Day 6 today. I'd say I improved 5% more today. No treadmilling yet today,maybe tonite. Too slow, but it's workin', I'm going all 15 days it looks like.We'll see...

Posted by Lymetoo (Member # 743) on :

/good luck

Posted by EZ-E (Member # 6436) on :

That's it folks! I'm quitting the steroids tonite!! This is my 10th day on 'em, & feel like I improved 30% by day 4. But that's it. I haven't got any better, & maybe have regressed a bit. Unbelievably FRUSTRATED!!My leg doesn't work!! Y'all told me so.......Frickin' Nuerologists....

Posted by pattiecake (Member # 6424) on :

sorry your hopes were dashed so....I know the feeling. When I started with this aweful itchy rash the derm doctors would not believe me when I said it was lyme related and neither would my gp so (i didnt know steroids were bad for lyme) they put me on steroids 3 times! The first 2 took the rash away like a charm but it was very depressing when it started to creep back about a month after stopping them. The 3rd time it didnt even touch the rash. So I understand your disappointment. Glad to hear you are stopping them but I think you need to wean yourself off of them... dont just stop.
pattiecake

Posted by Lymetoo (Member # 743) on :

quote:
Originally posted by EZ-E:
But that's it. I haven't got any better, & maybe have regressed a bit...... Unbelievably FRUSTRATED!!.....Frickin' Nuerologists....

Yes, make sure you've tapered them some. Stay away from neuros if you can!

Keep on keepin' on now!

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oops!
Lymetutu

Posted by EZ-E (Member # 6436) on :

Thanks y'all.......Yeah, In had already weened down to 30mg a day, then quit. My lDoc phone consult was this morning, & I added Flagyl to my Vantin. I also broke out crutches I had from a broken foot years ago. The crutches make it way easier gettin' around. The cane just wasn't working.....Onward & upward!!

[This message has been edited by EZ-E (edited 13 February 2005).]

Posted by LymeinME (Member # 6849) on :

EZ-E

Sorry the prednisone didn't work, at least you weren't on it too long.

I've decided not to go prednisone myself, partially because of your experience, and the urging of people on this forum. Plus my LLMD was'nt all that happy about it, he would have agreed to 10 days, but not the 1 to 2 months the Neuro wanted.

I am going to ask the neurologist about IVIG, have you looked into this?