posted
I haven't seen anything about steroid use in my short tenure on this site, so I thought for the less informed I'd post this information.
In the summer of '09 I injured my shoulder and went to an orthopedic specialist. He knew I have Lyme but is not familiar with it beyond the point that it causes joint inflamation. The MRI indicated I had torn my rotator cuff. I was in a lot of pain. He said do you want a cortisone shot? It will releave a lot of you pain. I naively said sure.
WOW !!!!!! What a mistake! I didn't know that steroids supress the immune system. I became almost as sick as I ever was! Every symptom in the book again. It took 3 months to get back to 90% (Where I was when I got the shot)
In closing; PLEASE learn by my mistake. Us Lymies immune systems are being taxed to the max. as it is. Please don't supress it with any steroids. I Hope this info helps someone who may be placed in a similar situation. Buzz
-------------------- 5 yr. Vet. of the Lyme war. Helping and sharing are now my only objectives.I have nothing to sell & I no longer interfear with things I cannot control. But, I have learned many good things from my affliction & am a better person for it. Posts: 51 | From Northeastern PA | Registered: Jul 2010
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Good point. There are many who have been damaged by steroids. There are many past threads, too, if anyone wants to read more.
Even topical steroid creams are not to be used as they are absorbed into the body. Steroid nasal sprays are to be avoided, too. A NETI POT can take their place. [Just Google]
We all hope that everyone new to lyme information will read Dr. Burrascano's guidelines - in that, he addresses steroids.
Two exceptions:
* if an emergency and no other method would have the same effect in order to save a life - or vision, etc. (but then WITH abx as detailed below) . . . and
* the use of LOW-dose Hydrocortisone (Cortef) for those in whom the "adaptogens" (Eleuthero, Ashwagandha, Rhodiola) or B-5 are not enough adrenal support. All those terms can also be searched in the archives as there are also many threads about all that.
[-- about asthma inhalers that contain steroids: consult your LLMD before making ANY changes or starting anything new.]
. . . We have seen literally dozens of patients with Lyme who were initially treated with steroids who reported a dramatic worsening rather than improvement as would be expected. Dr. Joseph Burrascano has coined the expression, ' Steroid Disasters, ' to describe these patients. . . .
. . . Corticosteroids can last in the body for months, usually around 6 months. In many bacterial infections such as LD, damage can be done. . . .
. . . More severe illness also results from other causes of weakened defenses, such as from severe stress, immunosuppressant medications, and severe intercurrent illnesses.
This is why steroids and other immunosuppressive medications are absolutely contraindicated in Lyme. This also includes intraarticular steroids. . . .
From page 12:
. . . More evidence has accumulated indicating the severe detrimental effects of the concurrent use of immunosuppressants including steroids in the patient with active B. burgdorferi infection.
Never give steroids or any other immunosuppressant to any patient who may even remotely be suffering from Lyme, or serious, permanent damage may result, especially if given for anything greater than a short course.
If immunosuppressive therapy is absolutely necessary, then potent antibiotic treatment should begin at least 48 hours prior to the immunosuppressants. . . . -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Tracy9
Frequent Contributor (1K+ posts)
Member # 7521
posted
I have been given a steriod shot in the ER on more than one occasion because I have an autoimmune disease and have adrenal fatigue, possibly Addison's. The fear is my adrenals could crash when under stress; and I guess when the body is under extreme stress of illness that is a risk, and it can be life threatening if that happens.
I worry about how we balance this, as I'm sure I'm not the only one in this situation. The shots have never hurt me. It's confusing.
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
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Tracy9
Frequent Contributor (1K+ posts)
Member # 7521
posted
One more exception; I have severe bronchitis last winter, and really had difficulty breathing. I had to take Prednisone for five days; it was the only thing that stopped the bronchospasms.
At the time, I was pretty certain breathing trumped Lyme.
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
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posted
Glad you posted this- I have the exact scenerio of a sore shoulder-Orthopedic doc mentioned a shot-but suggested I rest it and ice it , etc and if it is still as painful upon my return visit he'll give me a shot. I think I will pass on it.
Posts: 365 | From Sylvania | Registered: Aug 2008
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posted
I had THE worst pain in my shoulder...my GP referred me to a dr for the shots. Id had the shots 15 yrs ago and it was excruciating! So i was terrified of doing THAT again and never went for the shots. I was dx'ed with lyme 3 months later. For once my fear served me well. Now i know...no steroids for me!
Posts: 624 | From Oklahoma | Registered: Jun 2010
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Yeah, and - even though I knew this - I believed a foot doctor who said the injection solution is not absorbed into the body but would stay right in a foot joint.
I had a major relapse and was so much worse for months. It sure got absorbed into my body. I really don't think they can devise a steroid solution that just stays exactly where it is injected.
Had the same trouble when a doctor tricked me and shoved an inhaler in my mouth.
Although he told me it would not get into my body and stay with my lungs - it took me six months for the full body anxiety to settle down. My reaction was so serious that I often consider the E.R. to get an antidote but a friend who'd be around all this with "CFS" wisely informed me that no E.R. or doctor would KNOW what to do and it would just take time.
I did not know then about lyme (the next year, I was dx with 3 TBD) but I did know that inhalers generally sent me to the moon, big time. I told the doctor that but he literally fooled me and then "puffed" me with a very quick slight of his hand, armed with inhaler.
As Tracy mentioned above, there are times when asthma inhalers can save a life and, of course, then it's a no-brainer and you hope to be covered by antibiotics. But I was not in a life-threatening situation UNTIL he forced "puffed" me. I seriously think I must have been allergic to whatever he used.
But, bottom line: if you hear "oh, it does not get absorbed into the body" - consider that may not accurate information, at least for me, it was not. Even topical steroid creams are to be avoided as they are absorbed into the body. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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merrygirl
Frequent Contributor (1K+ posts)
Member # 12041
posted
I disagree.
At least when it comes to myself. I have had probablly 6 steroid shots and a 2 month course of oral steroids while Lymed. The oral steroids saved my life because I was suicidal from the pain.
I have had them in my neck, wrists etc.
So sometimes they help. They DO have side effects llike all meds.
But Talk with your doctor (llmd) about them. make a informed educated decision. For me I will continue to get them as needed.
Just got one last week
also wanted to add that I use flonase daily and that has steroids in it.
I am functioning the best I ever had with Lyme at 50%
Posts: 3905 | From USA | Registered: May 2007
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Tracy9
Frequent Contributor (1K+ posts)
Member # 7521
posted
Now I'm confused...asthma inhalers? A lot of people rely on asthma inhalers...including my son, who has severe Lyme. How do you go without your asthma inhaler????
I've never heard you weren't supposed to use asthma inhalers....
And I will say the five days I took Prednisone did not make my Lyme any worse, but everybody is different. All I know is that I was having so much trouble breathing it was ridiculous, and I can't use inhalers because I get a paradoxical reaction. The oral steroids were the only thing that opened up my airways, finally.
However I absolutely do understand that steroids can be brutally dangerous for most Lymies.
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
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Dawn in VA
Frequent Contributor (1K+ posts)
Member # 9693
posted
I'm on a steroid inhaler for asthma when it flares up. I'm sure it depresses my immune system to some degree, but I don't feel significantly.
High doses of prednisone, however, always throws me into a relapse.
BUT, simply put, if ya breathe, ya can't fight Lyme!
-------------------- (The ole disclaimer: I'm not a doctor.) Posts: 1349 | From VA | Registered: Jul 2006
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Not all asthma inhalers are steroids.
And, each person just needs to communicate with LLMD before starting anything new.
Of course, breathing matters. But the LLMD needs to know exactly what kind of inhaler is being used - to be sure the risk/benefit ratio is balanced and that abx protection is covering all the bases.
There are very serious reasons that Dr. B and other LLMDs caution so strongly about steroid use in lyme patients. But, each person has to work that out with his or her LLMD.
A non-steroidal inhaler that uses nedocromil sodium has helped me at times. It does not produce the "revving" of a steroid inhaler. But a gluten-free and diary-free diet seem to help the most.
Carpeting is a huge cause of lung trouble for many. I wish we would just never had had it, at all. It's in all rentals and most houses. If one is so lucky to have hardwoods or other styles of bare floors, maybe with just light area rugs (minus the petro-chemicals) here and there, that's a good thing.
For some people, there are other methods of lung support that can help. A Salt Pipe has been very beneficial to some. Stinging Nettle and Quercetin, too. There are many other ways to decrease inflammation in the body - and in the lungs.
It's best to follow your LLMDs advice, as they are aware of all considerations.
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