PREDNISON IV'S

[DAR]

My neurologist finally got the results back from my biopsy on my muscle, he stated that my muscles are very inflamed, and that I need to do prednison IV's for 5 days then once a week for 5 weeks, has anyone else done this, if so any side effects, I am really kind of nervous about doing this, but I need to get my CF count down, do you feel really awful when you are coming off of this ? is it okay to still take my doxy for my sd? sorry about all the questions but I am a little nervous as you can tell

DAR

[Maz]

Dar, did you see Magpie's responses to your earlier posts? You'll find them at the end of this thread.

http://www.rbfbb.org/view_topic.php?id=953&forum_id=1&highlight=DAR+ck

I'm sorry I don't have any insights for you about the prednisone IVs, but the IVIG sounds like it might be a nice adjunct to look into, according to Magpie.

Is there a particular reason why you're on doxy, as opposed to minocycline for your scleroderma? …you may have mentioned why before, but my memory escapes me on this. 😕 

Peace, Maz

[Kim]

Hey DAR,

Sorry you're being faced with this decision.  It would take a lot of convincing for me to agree to let someone do Prednisone IVs for SD. 😕  Where's he going with this?  What is step 2 after the inflammation is reduced?  If it is only for short-term pain relief, I wouldn't subject my veins to that trauma and irritation.  What if the inflammation comes right back?  More IVs?  

So much of my fibrosis is deep in the muscles and really improves when I've been a good APer and really tightens up when I've been under stress.  I've been very stressed lately and am reminded of the correlation of stress and health,  because at least for me, it always makes the SD worse. :sick:  I try to eat as clean as possible and walk as much as possible for circulation.

You have to trust your gut, and just say no if it doesn't feel right.

Good luck…..kim

[DAR]

Maz, I am on the doxy because my rhuemy won't give me mino, but by my next appointment I have some new ammunition that I am going to lay on her and I believe that will change her mind, been writing down all kinds of stuff from the info every one had provided here.  my neurologist wants me to take the IV's because my cf count is so high it is1576 and should be down in a range of 212, I do have a lot of body weaknes especially in my legs but have blamed this on the sd and had figured in time that would go away, the doctor also informed me that my heart is a muscle and that this is effecting my heart also kind of put things in different perspective when he said that, but I am still not sold on the IV's yet, wll let you know what I decide to do

Dar

[Maz]

[user=387]DAR[/user] wrote:

Maz, I am on the doxy because my rhuemy won't give me mino, but by my next appointment I have some new ammunition that I am going to lay on her and I believe that will change her mind, been writing down all kinds of stuff from the info every one had provided here. 

Dar, if this is any help at all, these are links to some articles and studies on minocycline and scleroderma that you could print out from the main website to give to your doctor to further your case to try minocycline:

https://www.roadback.org/index.cfm/fuseaction/studies.display/display_id/68.html

https://www.roadback.org/index.cfm/fuseaction/studies.display/display_id/67.html

https://www.roadback.org/index.cfm/fuseaction/studies.display/display_id/377.html

https://www.roadback.org/index.cfm/fuseaction/aboutrbf.display/display_id/160.html

https://www.roadback.org/index.cfm/fuseaction/aboutrbf.display/display_id/159.html

https://www.roadback.org/index.cfm/fuseaction/aboutrbf.display/display_id/158.html

http://www.womansday.com/health/12875/i-didnt-recognize-myself.html

Also, if it would help, we can give you the phone # of Dr T in Boston who was involved in the minocycline and scleroderma trials. Perhaps your doc could consult with him?

Wishing you well in your decision-making process with the IV prednisone. I know it can't be easy, but it might be good to ask for a second opinion with Dr T. Physicians do this all the time and should not be perturbed if such a patient request is made. Sometimes docs are actually relieved to get another expert's insight. Worth a try to help you with your decision?

Peace, Maz

 

 

[DAR]

MAZ, I would greatly appreciate the number of Dr T in Boston

Dar

 

[Maz]

[user=387]DAR[/user] wrote:

MAZ, I would greatly appreciate the number of Dr T in Boston

Dar, have sent you a private message with both Dr T and Dr S's contact info. I believe both docs do physician-to-physician consults.

To retrieve your private message, look to the top right of this page and beside where it says, “Logged in as….” you will find “1 new message.” Just click on this to open your mail.

Peace, Maz

[Parisa]

DAR,

My husband is doing IVIG for his muscles.  Prednisone never did a thing for them (of course, everyone is different).

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