Lyme and prednisone

[luvmywonderfulkids]

Well, Ryan had his MRI with contrast of his right arm and there is no fasciitis only morphea. Because of this, the dermatologist wants to put him on prednisone for 4 weeks starting at 40 mg and going down 10mg each week.

I am scared to death to do this because of the positive lyme. I have read everywhere that the worse thing you can do with someone that has lyme disease is give them prednisone and I mentioned this to the dermatologist and she said that was only with acute lyme. She has also increased his mino from 50mg 2x/day to 100mg 2/day.

We do have an appointment with Dr. J. in CT, but not until February. The dermatologist is just extremely worried about permanent joint damage so I believe she is acting in Ryan's best interest, I am just not sure she knows what that is because she is not that familiar with lyme.

Please help!

Sue–Ryan's Mom

 

[Maz]

[user=1274]luvmywonderfulkids[/user] wrote:

We do have an appointment with Dr. J. in CT, but not until February. The dermatologist is just extremely worried about permanent joint damage so I believe she is acting in Ryan's best interest, I am just not sure she knows what that is because she is not that familiar with lyme.

Sue, as you have an appt coming up next Feb with Dr J, have you considered calling their office to ask if pred would be suitable for Ryan? I'm sure his dermatologist is acting in his best interests, but even when the infection is chronic, it is still active and loves immune-suppression, as you've researched. According to my LLMD, Lyme patients find pred actually ramps up disease progression and prolongs recovery times with the need to keep ramping up the dose in order to mask symptoms.

There may be alternatives….plaquenil, for instance. I'm not sure of the pediatric dose, but plaquenil also has anti-inflamm benefit. Its use by LLMDs is two-fold…to hit the dormant cystic form of Lyme (which causes persistence) and to also target the commmon coinfection of Lyme, babesia, which is a protozoan infection (like malaria for which plaquenil was originally designed).

As you know, I'm just a Lyme patient, myself, but I can't help wonder if plaquenil might be a reasonable solution for Ryan and whether Dr J's office might give you some insight about him using it as an alternative to pred, as you have an upcoming appt with them? If they think it would be a good substitute, then perhaps suggest it to the dermatologist?

Wishing you all the best in this, Sue. Making health decisions that are contrary to conventional wisdom are hard at any time, but even more so when they involve our kids. You just have to do due diligence with your research and go with your gut much of the time…not easy. :crying:

Peace, Maz

[luvmywonderfulkids]

Thanks Maz! I never thought about calling his office. I will try that tomorrow and hold off on the prednisone. I am so worried that I will make the wrong decision.

Sue–Ryan's Mom

[Trudi]

[user=1274]luvmywonderfulkids[/user] wrote:

…there is no fasciitis only morphea.

Hi Sue–

Not knowing what morphea was I Googled it and came up with this interesting cause:

[*]Infection or vaccination [/*]

• Infections, such as Epstein-Barr virus infection, varicella, measles, and borreliosis, have been reported to precede the onset of morphea and have been proposed as possible triggers. [/*:1oayr7qi]
• The most extensive literature focuses on Borrelia burgdorferi as a possible etiologic agent for morphea. Some studies have detected Borrelia DNA within morphea lesions from a subset of European and Japanese patients (representing Borrelia afzelii and Borrelia garinii rather than B burgdorferi sensu stricto, the predominant subtype in the United States); however, to date, this has not been demonstrated in patients from the United States.^9,10,11 Several more studies found no serologic or polymerase chain reaction?based evidence of Borrelia infection in patients with morphea.^12,13 [/*:1oayr7qi]
• Morphealike lesions have also been reported to occur after BCG and tetanus vaccinations.

[/*]
http://emedicine.medscape.com/article/1065782-overview

Since Ryan is positive for Lyme, it could be the trigger for his morphea.  I agree with Maz, give Dr, J's office a call and run it past him.  40 mg of prednisone seems awfully high.

My own personal experience with prednisone, taken 3 years prior to my Lyme diagnosis, was only for a week (I think only 5 mg) to get through my son's wedding.  I must admit I felt wonderful while on it; however, the rebound effect when it wore off was horrible.  I was on hydrocortisone (very mild steroid) at my first LLMD appointment.  He told me to stop it immediately.

You're being confronted by a lot of hard decisions; my heart goes out to you; hoping that you get some information from Dr. J's office–

Take care,

Trudi

 

Lyme/RA; AP 4/2008 off and on to 3/2010; past use of quinolones may be the cause of my current problems, (including wheelchair use); all supplements (which can aggravate the condition) were discontinued on 10/14/2012. Am now treating for the homozygous MTHFR 1298 mutation. Off of all pain meds since Spring '14 (was on them for years--doctor is amazed--me too). Back on pain med 1/2017. Reinfected? Frozen shoulder?

[luvmywonderfulkids]

Thanks Trudi, this is all so overwhelming! He was first diagnosed with JRA, then scleroderma, then MCTD, then the biopsy came back positive for morphea but his joints are real bad. He can not make a fist or straighten out his hand and he can not move his wrists. One thing about Lyme that they keep talking about is swollen knees and ryan does not have that! He did have some pain in them when he walks alot but no swelling. Is the problem with his hands lyme related?

[Trudi]

[user=1274]luvmywonderfulkids[/user] wrote:

One thing about Lyme that they keep talking about is swollen knees and ryan does not have that!

Hi Sue–

The swollen knees didn't surface for me until December 2007–4 1/2 years after my bite; my original diagnosis was rheumatoid arthritis.  Of course, we now know it was Lyme triggered and hope it will be gone when the Lyme is under crontrol.

I also have problems with my hands and wrists; there are days I have a hard time writing my name.  I used to make all of our bread by hand–no machine–the good old days :roll-laugh:.  That is impossible now–but one of these days–!!

He was first diagnosed with JRA, then scleroderma, then MCTD, then the biopsy came back positive for morphea but his joints are real bad.

As I reread your sentence, I'm reminded that Lyme is the great imitator–Ryan's multiple diagnosis' bear witness.

Again, I hope Dr. J's office can give you some reassuring advice.

Best to you and Ryan,

Trudi

Lyme/RA; AP 4/2008 off and on to 3/2010; past use of quinolones may be the cause of my current problems, (including wheelchair use); all supplements (which can aggravate the condition) were discontinued on 10/14/2012. Am now treating for the homozygous MTHFR 1298 mutation. Off of all pain meds since Spring '14 (was on them for years--doctor is amazed--me too). Back on pain med 1/2017. Reinfected? Frozen shoulder?

[Maz]

[user=1274]luvmywonderfulkids[/user] wrote:

He can not make a fist or straighten out his hand and he can not move his wrists. One thing about Lyme that they keep talking about is swollen knees and ryan does not have that! He did have some pain in them when he walks alot but no swelling. Is the problem with his hands lyme related?

Hi Sue,

If it helps, I'll share my experience of Lyme, too. In the beginning, I had claw-like hands, as well. I could not make a fist or bend my wrists and I had several sausage fingers. Although the joint, muscle and tendon pain was migratory in the beginning (shifting locations day-to-day), with no swelling, the swelling arrived later, after the joint pain became more fixed in the joints.

It took quite a few months to regain full flexibility in my hands (about 9 months to a year), but after the first few months of Lyme treatments, my hands started loosening up. Physicial therapy also helped me to unclench my hands after I got through the first few months of herxing, particularly theraputty exercises and hot paraffin wax baths that I continued for a full year. The swelling also gradually came down and I now have full range of motion again in my hands and wrists and can wear my wedding rings.

In fact, all my joints are almost 100% now (frozen shoulders, elbows, jaw, 1 knee and ankle. My hips and spine were spared), except for one knee and one ankle that still have a bit of swelling left. They're like Custer's last stand! They were the last joints to become affected, so I figure the bugs are holed up there and will just take patience and a bit more time to root the little terrorists out, to coin a phrase.  All told this has taken 2 year and 8 months of antibiotic therapy.

Although Lyme knees are typical of Lyme, it's not a given that everyone with Lyme will present in the same way. The organisms will burrow anywhere they can get to and the infections mimic everything under the sun….just as syphlilis will do if untreated and chronic. As Trudi mentioned, the confusing mix of diagnoses a Lyme patient will get is pretty typical.

My best friend was just diagnosed with Lyme a couple months ago, though her GP thought she had RA as her RF was elevated  and her frist ELISA came back negative :(…her hands and wrists have been most affected with just knee pain and no swelling. She was lucky…at her initial rheumy visit several weeks later, he re-tested her for Lyme and she came back CDC positive, as well as for babesia. Fortunately, she didn't take the pred her GP gave her.

It's still very early days for Ryan on mino, but do hope it won't be long until he starts experiencing some improvements, Sue. It's a long old journey, but one that is well worth taking.

Peace, Maz

 

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