rheumatologist urging me to try low-dose steroid to help with hand pain/swelling

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LilyPanda
Regular Member


Date Joined Jun 2016
Total Posts : 70
   Posted 2/20/2018 10:31 PM (GMT -6)   
I have seen many warnings, here and elsewhere, against taking any steroids if you have tick-borne illnesses. I am wondering if any of you have gotten to the point where you had to decide whether to risk taking one anyway, and how that turned out. Is there ever a time where the possible benefits outweigh the risks?

I'm dealing with inflammatory arthritis and osteoarthritis in both hands. It came on very quickly, and it seems to be getting worse day by day. (A few months ago, my hands were normal. In December, I developed minor joint pain in my fingers that steadily got worse. In January, my finger joints -- the DIP and PIP joints -- became enlarged, almost overnight. The joint swelling is bony rather than soft or boggy.)

An ultrasound showed synovial inflammation (meaning some type of inflammatory/autoimmune arthritis), and also osteophytes (which is a sign of osteoarthritis, probably triggered by the inflammation). I'm extremely scared and stressed by how quickly these things happened and how bad they've gotten. My fingers hurt all the time now, and I'm starting to see some swelling between the joints too. I also have discomfort in my knees, ankles, toes, elbows, back, and (oddly) my upper arm.

I started Plaquenil about a month ago. I've noticed no improvement yet, though I understand that any improvement (if I'm one of the lucky people for whom it works) can take a long time. I also recently began taking Meloxicam (starting with a small 7.5 mg dose), even though I know it's hard on the stomach. But I'm in a lot of discomfort.

My rheumatologist is urging me to try low-dose steroids because it may help to prevent damage to my joints. She adamantly does not believe that Lyme is an issue for me. (She believes that I may once have been exposed to Lyme, but she does not believe that it could persist after antibiotic treatment or that it can cause symmetrical arthritis in multiple small joints.)

Is it crazy for me to consider this? I have to admit that I feel a little desperate at this point. If I were confident that Lyme treatment will eventually resolve this pain/swelling, I would try to hold out. But I'm afraid that maybe this really is an autoimmune thing (maybe triggered by Lyme) -- and that I risk further permanent joint damage if I don't act quickly. I just want to do the right thing.
Started herbal treatment for Lyme in early 2017. Did 1 month of doxy Aug. 2017; started doxy again Jan. 2018. Uncertain about diagnosis b/c tests have been iffy, and my symptoms (dry eyes/mouth, finger joint pain/swelling) look like classic autoimmune issues. Different tests at different times have shown Lyme, babesia, bartonella, ehrlichia -- most recent tests show only Lyme (IgM bands only).

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 33963
   Posted 2/20/2018 10:51 PM (GMT -6)   
I don’t envy you having to make this decision.

So, it’s not only discomfort you will continue to have, but not addressing the inflammation could cause permanent damage? I know you must be worried about this.

Do you have a Lyme Dr? Either a MD or a ND?

I think I would ask him/her.

Depending on where you live - I may have a LL Rheumatologist you could see.
I think I have one listed in NY State - can’t remember which city.
Moderator, Lyme Forum
Symp started April/2013; Buhner's Lyme May 15-July24/14; Igenex pos. July 3/14
Doxy: July 4-Aug.24/14;Zithro July26-Aug24/14; Amox + Proben. Aug. 29/14;
added biaxin Sept. 26/14
Disc. amox,added Ceftin Nov. 20th.;
Disc. biaxin added Buhner bart herbs Dec/14;Jan/15 pulsing Tinda (w/ Ceftin);
Abx/herb break Apr-July/15; July-mino; Aug. added Rif;
Nov./15 mino - to biaxi

WalkingbyFaith
Veteran Member


Date Joined Aug 2017
Total Posts : 2041
   Posted 2/20/2018 11:00 PM (GMT -6)   
LilyPanda,

Bartonella can cause those symptoms. Only you can decide what to do. I would recommend taking japanese knotweed and IHA Formula (isatis/houttynia/alchornea) herbs for this. Start with low doses and work up slowly. Give it a few months and see if anything changes. Be aware that symptoms could worsen before they improve and that pattern can repeat itself. Those are herxes.

magoo2
Veteran Member


Date Joined Mar 2015
Total Posts : 1305
   Posted 2/20/2018 11:08 PM (GMT -6)   
Are you talking about prednisone?
if so I believe that lower the immune system-which is not good for infections.-tough choice but learn all you can before deciding

LilyPanda
Regular Member


Date Joined Jun 2016
Total Posts : 70
   Posted 2/20/2018 11:14 PM (GMT -6)   
Girlie, I live in New York City. I would be grateful for any recommendations you have.

I stopped seeing my previous LLMD because she didn't seem to have enough expertise on Lyme (though she was wonderful in other ways). My primary care NP is currently treating me for Lyme while I wait for my appointment with an LLMD practice in Wilton, CT (though that's not until April). My primary care NP is not a Lyme specialist, but she follows Dr. Horowitz's protocols and is constantly trying to educate herself on Lyme treatments.

WalkingbyFaith -- I don't know why I can't just accept, one way or the other, what is causing my symptoms. Sometimes I read people's accounts here and then I believe my issues are Lyme-related and that good Lyme treatment will help me. Sometimes I despair and believe that my symptoms are strictly autoimmune, that they'll only get worse, and that maybe I have to hit them hard with aggressive medications.

It's hard when you have doctors and other sources insisting that Lyme can't cause these kinds of symptoms. After a while, I start to believe that they're right, and that I'm foolishly chasing false hopes and false cures.
Started herbal treatment for Lyme in early 2017. Did 1 month of doxy Aug. 2017; started doxy again Jan. 2018. Uncertain about diagnosis b/c tests have been iffy, and my symptoms (dry eyes/mouth, finger joint pain/swelling) look like classic autoimmune issues. Different tests at different times have shown Lyme, babesia, bartonella, ehrlichia -- most recent tests show only Lyme (IgM bands only).

LilyPanda
Regular Member


Date Joined Jun 2016
Total Posts : 70
   Posted 2/20/2018 11:35 PM (GMT -6)   
magoo2, I'm sorry -- I think your reply must have posted while I was writing my last response and I didn't see it in time. Yes, I think my rheumatologist means prednisone. I've seen pretty strong warnings against taking it -- and I've seen several posts by people who believe that prednisone caused their tick-borne illnesses to be much worse and much harder to treat.
Started herbal treatment for Lyme in early 2017. Did 1 month of doxy Aug. 2017; started doxy again Jan. 2018. Uncertain about diagnosis b/c tests have been iffy, and my symptoms (dry eyes/mouth, finger joint pain/swelling) look like classic autoimmune issues. Different tests at different times have shown Lyme, babesia, bartonella, ehrlichia -- most recent tests show only Lyme (IgM bands only).

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 33963
   Posted 2/20/2018 11:57 PM (GMT -6)   
I understand the dilemma - even if Bartonella is the cause....it could still cause damage...you want to try to stop it sooner than later.

But, the flip-side is the steroids allow your infections to flourish...it's a catch 22.

I quickly scanned my LLMD list for New York State - and didn't see a Rheumy ...sorry.

But, there is one in Maryland. Looks to be about 3-4 hours away.
Moderator, Lyme Forum
Symp started April/2013; Buhner's Lyme May 15-July24/14; Igenex pos. July 3/14
Doxy: July 4-Aug.24/14;Zithro July26-Aug24/14; Amox + Proben. Aug. 29/14;
added biaxin Sept. 26/14
Disc. amox,added Ceftin Nov. 20th.;
Disc. biaxin added Buhner bart herbs Dec/14;Jan/15 pulsing Tinda (w/ Ceftin);
Abx/herb break Apr-July/15; July-mino; Aug. added Rif;
Nov./15 mino - to biaxi

bluelyme
Veteran Member


Date Joined Nov 2015
Total Posts : 4917
   Posted 2/21/2018 3:43 AM (GMT -6)   
try frankincense eo followed by dmso ...bee venom will stop swelling too

Razzle
Veteran Member


Date Joined Aug 2007
Total Posts : 4415
   Posted 2/21/2018 6:36 AM (GMT -6)   
Buhner (a Lyme-Literate Herbalist) recommends Stinging Nettle leaf for joint pain and inflammation specifically because he says it not only reduces inflammation but also helps protect the joint from damage. You can apply a poultice topically if you can't stomach the herb...

I took it in capsules, and would sometimes even drink tea made from Nettles (and some peppermint to make it more flavorful), and it did help with hand pain for me.
-Razzle

Chronic Lyme, Bart., Gluten & Sulfite Sensitivity, Many Food/Inhalant/Medication/Chemical Allergies & Intolerances, Asthma, Gut dysmotility & non-specific inflammation, Lupus, Osteoporosis, etc.; G-Tube; TPN-dependent
Meds: Essential Oils, Homeopathy, etc.

tickbite666
Veteran Member


Date Joined Mar 2014
Total Posts : 1664
   Posted 2/21/2018 7:32 AM (GMT -6)   
I fired my Rheumatologist when she wanted to put me on steroids. I had joint pain and stiffness in most all of my joints... hands, shoulders, back, knees and feet. Inflammation showed up in x-rays. She first thought it was gout, then dx'ed some rare form of arthritis. She never accepted my Lyme diagnosis and mentioned something about a Dr. Allen Steere conference she attended. I guess she knew a lot on the subject.

All joints got better with Lyme treatment, except for some lingering pain in one thumb joint. It will take time.

You will be in good hands with Dr P in Wilton... one of the best around.

Post Edited (tickbite666) : 2/21/2018 5:41:46 AM (GMT-7)


WalkingbyFaith
Veteran Member


Date Joined Aug 2017
Total Posts : 2041
   Posted 2/21/2018 9:03 AM (GMT -6)   
LilyPanda said...


WalkingbyFaith -- I don't know why I can't just accept, one way or the other, what is causing my symptoms. Sometimes I read people's accounts here and then I believe my issues are Lyme-related and that good Lyme treatment will help me. Sometimes I despair and believe that my symptoms are strictly autoimmune, that they'll only get worse, and that maybe I have to hit them hard with aggressive medications.

It's hard when you have doctors and other sources insisting that Lyme can't cause these kinds of symptoms. After a while, I start to believe that they're right, and that I'm foolishly chasing false hopes and false cures.


Don't feel bad, LilyPanda. I totally understand the dilemma and not knowing for sure what to believe. If you're open to using herbs, I still would recommend you get those herbs I mentioned and start taking them while you're waiting to see the LLMD.

Lapis_29
Veteran Member


Date Joined Sep 2017
Total Posts : 882
   Posted 2/21/2018 10:30 AM (GMT -6)   
before doing the steroids, consider trying My science based Anti inflammatory/cytokine protocol that has really helped me

/www.healingwell.com/community/default.aspx?f=30&m=3976619

I have had very dramatic reduction in all over inflammation with that protocol, its has really worked for me.

also, try DMSO on achey joints, its anti inflammatory properties are amazing

Lapis_29
Veteran Member


Date Joined Sep 2017
Total Posts : 882
   Posted 2/21/2018 10:38 AM (GMT -6)   
LilyPanda said...


I'm dealing with inflammatory arthritis and osteoarthritis in both hands. It came on very quickly, and it seems to be getting worse day by day. (A few months ago, my hands were normal. In December, I developed minor joint pain in my fingers that steadily got worse. In January, my finger joints -- the DIP and PIP joints -- became enlarged, almost overnight. The joint swelling is bony rather than soft or boggy.)

An ultrasound showed synovial inflammation (meaning some type of inflammatory/autoimmune arthritis), and also osteophytes (which is a sign of osteoarthritis, probably triggered by the inflammation). I'm extremely scared and stressed by how quickly these things happened and how bad they've gotten. My fingers hurt all the time now, and I'm starting to see some swelling between the joints too. I also have discomfort in my knees, ankles, toes, elbows, back, and (oddly) my upper arm.




this is the kind of thing that DMSO was made for.

/www.healingwell.com/community/default.aspx?f=30&m=3914807

Kat1000
Veteran Member


Date Joined Feb 2017
Total Posts : 670
   Posted 2/21/2018 10:39 AM (GMT -6)   
I would try anything before steroids, regardless of lyme. I have the feeling you described in my hands. It's gone up and down with lyme treatment. Mostly my symptoms have been very muscular, but now I notice that my joints feel worse the last few weeks - hands and knees. I have lyme and bartonella, though mostly dealing with bart now.

I started sleeping with those wrist supports that people wear for carpal tunnel, and that has been helping. I'm also trying out the Biopure Cocktail.
MTHTR single mutation; Positive Igenix IgG Jan 2017; March/Apr '17: doxy, Tinizadole. 5/1 samento and mino/tini. 5/28- back to doxy, added activated charcoal. 6/9 - stopped antibiox; staying with samento, red root and houttiya and supps. tried LDN; 8/24 rifampin, samento, red root and supps. On and off rifampin. 1/1/18 - 1/20 rifampin. Herbs and vitamins only now.

Tashin
New Member


Date Joined Feb 2018
Total Posts : 15
   Posted 2/25/2018 9:52 PM (GMT -6)   
Hey,
If there is a chance you have any tick borne infection stay away from corticosteroids. You could talk to your rheumatologist about low dose naltrexone. They should be aware of it, if not here's a study. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3962576/
My rheum suggested it to me for autoimmune issues but I haven't tried it as yet. Some lymies, think it helps them, and it is being shown to help in inflammation which is good in either case. No rheumatologist will consider Chronic lyme as a real condition, so just make sure you look out for yourself.
Also good anti inflammatory herbals...a quality tumeric (with piperine), Boswellia complex from mediherb, skullcap from standard process.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3962576/
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