Pyoderma Gangrene | Arthritis Information
Haven't posted in awhile, things have taken a turn for the worse...
I'm looking for anyone who has RA related Pyoderma Gangrene... Here is a link to PG if anyone doesn't know what it looks like...
Am seeing a Derm. & RD... off methotrexate now- on 50mg Prednisone & sliding scale insulin because of Diabetes...
Right now I have maybe 30-40 spots from foot to mid-thigh on right, 15 from foot to mid-calf on left, - pea to lemon size... the Dr. wants to start infusions of either Cytoxan or Imuran next week... Cytoxan being his 1st choice... the steroid seems to be feeding it... the spots have grown by half in the past 8 days of being on this drug...
I would appreciate anyone with information on PG or either of these 2 infusion drugs sharing your experience with me... in the dark here...
Also, once you start infusions can you stop them or is it forever?
Peace to you all...
critter2008-10-05 20:02:58Critter,
I'm so sorry you're having to deal with this new problem besides the RA and diabetes. I'm not familiar with this, so can't be of much help, but I hope the infusion will take take care of this and you will be doing better real soon. Good luck, take care.
Critter -
I think my grandmother had something like that - she had leg ulcers that never healed and she was diabetic.
I can't help with info on the meds you asked about but there are some mino studies.
Also. do you have IBD or UC? There seems to be some connection. Also on PubMed if you search probiotics and IBD and/or UC you will see there are a lot of studies. Maybe if you helped your intestinal tract out it would help them heal.
Hugs,
Pip
I am so, so sorry to hear about this Critter. I can't even imagine what you are going through. My prayers are with you.
I have heard about them using hyperbaric chamber treatments for this - is that an option for you?
Prayers!! Ouch !! I didn't know RA in it's self could cause this. Sounds more on the order of scleroderma. Please keep us updated if you get a chance. But your health first. I don't know the answer to any of questions. I really do not think the pred is making it worse even if it seems that way. You are producing to much collegen so please keep taking the prednisone. It should help. Well i would go with the doctor on this one. It is scary and i would hate to second guess.
Joie,
Thank you for the good thoughts, they are appreciated and needed at this time...
Pip,
I have saved your link and will check it out...
"do you have IBD or UC"
IBD- Inflammatory Bowel Disease, no- don't need to add this to the mix...
UC- ulcerative colitis, nope, don't want this one either...
I looked these up on your link & found out what they stood for, you have helped me already... thank you...
My PG is related directly to my RA, the Dr. is calling this aggressive RA... the commercials on TV get me... "I take ---- and now can ride my bike with the grandkids" or " ---- has helped me start mountain climbing again"... well... leaves me at a loss for words...
Once you start infusions can you stop them or is it forever?
Hillhoney,
Thank you for the prayers, with so much going on it can't hurt to have one more whispering in God's ear...
Peace to you all...
I noticed your little note there on the bottom about not understanding RA. Isn't it always just the opposite of what you would expect. Seems anymore the only time my eyes water is when i take an antihytimine. I have had some skin issues more a year ago. I take prednisone daily and vitamin c religously. Took a while for it to kick in. Vitamin C aids in collagen production but i believe it also helps keep it regulated. Of course ask your doctor with all you have going on. I think you just keep taking them but I don't know for sure. Somebody else will jump in and help, I'm sure.
OK, let's try another tack. Do you radiate between too loose and constipated? Because for some, that's the start of IBD. Do you get stressed and it get the big D? The reason I'm pushing this is because some of those links had a big connection to IBD even tho the patient didn't think they had it.
You know, either way, if you search here you'll find a lot of info on probiotics. I've read a ton of studies and there are some huge connections that up to 70% of our immunity comes from our guts. I'm just thinking that if you had more good gut flora, maybe it will help you heal with the PG.
Also, if you search diabetes and PG on Pubmed, you'll see a bigger connection.
Not trying to be depressing - just think you need to research all angles.
Hugs,
Pip
Milly,
"I didn't know RA in it's self could cause this."
Yes, PG can be caused by several things, to my surprise- RA is one of them... mine is trauma induced- my foot got hit 2 times in the same place which caused it to bloom out & spread...
To my good fortune, all 3 of my Dr.s work well together & are fighting to keep me out of the hospital & whole... fear is once they start removing things it never stops...
"Vitamin C aids in collagen production"
I will ask about this... this disease along with NLD= a good portion of the skin & underlying tissue on my legs & feet are dying...
Pip,
"Do you radiate between too loose and constipated"
No, to my knowledge this is not my problem... I do know that once PG takes hold it can attach itself to the heart, liver, kidneys, etc... The Dr's say my body is attacking itself, right now I have 4 autoimmune diseases... Diabetes, RA, NLD & PG...
"if you search diabetes and PG on Pubmed"
Will do that as soon as I'm finished here, thank you...
Peace to you all...
Critter, I'm so sorry that this has happened to you. Everyone's advice is well and good but PG is a whole seperate issue from RA in how it's treated and is a serious, uncooperative disease that is very sensitive to some meds, vitamins, and treatments and not sensitive in a positive way.
It's good to hear that your doctors are working together on this. A couple of heads together is better for you. There are several directions they can go with stopping this disease. I don't know anything about the infusions and you should talk more closely with your doctors about them. Make your list of questions.
I'll be thinking about you. Keep us posted on how you're doing and what therapies and treatments you'll be getting. Being a nurse I'm interested in what new therapies they'll be using. I just remember the disease from the old days. Take care. Lindy
"PG -a serious, uncooperative disease - very sensitive to some meds, vitamins, and treatments- not sensitive in a positive way"
I'm learning this, was in shock the last 2 weeks since dx, now it's time to wake up and find out all I can...
"therapies and treatments"
I think he'll be taking me off the Prednisone & starting infusions... kind of hoping to stay on insulin though, when we get it regulated it should help a lot... everything is so up in the air right now... was always proud of my low A1c, but PG has blown this out of the water...
Thank you for the thoughts, I will keep you informed on the treatments & such...
Peace to you LinB...
Hugs, critter ~
Pip
Critter,
I don't have any advice, but I sincerely hope your doctors can find something that helps. The PG sounds terrible, as if RA and Diabetes wasn't enough to bear. I was on Pred. for a year to overcome an awful flare and had to make adjustments with my insulin pump, but the relief the Pred. gave me was incredible.
Good Luck.
"I was on Pred- year- flare -make adjustments -insulin pump"
Did this make your bs go up bad? My A1c has been 4.74 for over a year, but now my #'s are running 200-300... reckon the next A1c will be off the charts... I've also been told you have to step-down off Pred., think this means taking less each couple of days until you are off... so good to know someone else understands the conflicts between the 2 diseases...
Thank you for the kind words...
Peace to you Ninilchicken...
Were you diabetic before you started the Pred. or did it cause you to become diabetic? Cripes, 4.75 A1C, do you have lots of low episodes with that? My primary care physician would never prescribe pred. and then when I went into a terrible flare, and he couldn't gain control of it, he sent me to another dr. who prescribed the pred. until the Remicade took hold. Actually I talked to people here who convinced me to ask for the Pred., man that was a long time ago. Yes my blood sugar went high, but I just made the pump give me more insulin, it was alot like being pregnant. It took me several months to get off the pred., stepping down 2 weeks at a time and finally cutting the pills into quarters. I would go back on it if it were an option, the RA was so much better, but my dr. is satisfied with what the Remicade is doing.
"diabetic before you started the Pred"
Diabetic 12 years, RA 1+ year, pred. 2 weeks... he upped my insulin today,
since I'm running so high on it...
"4.75 A1C, do you have lots of low episodes with that"
Yes, and I was really used to it, would rather deal with lows then these highs...
"My primary care physician would never prescribe pred"
It took PG for me to get pred., the RD wouldn't do it as a treatment...
"Remicade"
You do infusions? The Dr. gave me a choice today, this or Cytoxan, I chose the C.
since it's in pill form, but will still have to go to his office every week for blood work...
gotta' find a closer place to do all this testing- have a hard time driving into the city...
the plus with C is going bald & throwing up daily, per the Dr... with what else he said
these seem so small, the side effects of all these drugs have me peeling paint off the
wall with my teeth...
The drug store called, said C isn't ordered often & I'll have to wait for it to come in...
"Yes my blood sugar went high, but I just made the pump give me more insulin"
Hopefully I'm not near the pump, but do you like it? I've always heard people are happy
once the hassle of shots is over...
"several months to get off the pred., stepping down 2 weeks at a time and finally cutting
the pills into quarters"
Didn't realize it took so long to get off of pred., reckon I have so much to learn...
"Pred- the RA was so much better"
Haven't noticed a difference yet, but it's only been 2 weeks... he did say I could stop
taking the Diflunisal since the pred. will stop the pain... guess my pain is PG related
cuz' it hasn't stopped yet... may just needs more then 2 weeks...
but my dr. is satisfied with what the Remicade is doing.
If you don't mind my asking, how does this go? Do you mind having the infusions...
If you don't want to answer any questions I understand...
Peace to you Deidre...
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