- This topic has 11 replies, 8 voices, and was last updated 16 years ago by
.
-
Posts
-
I need some opinions and any info, advice or personal experience you all may have.
How do you guys feel about IV's and scleroderma? I had to start seeing a new AP doctor and she mentioned she doesn't feel IV's make much of a difference. She also mentioned I was one of the worst cases of scleroderma she's seen, which made me wonder if thats so, wouldn't she want to do IV's? She wants to put me on Flagyl along with the Minocin but wait and see on the IV's. I am concerned because I have been doing well on the IV's and Mino as far as my skin loosening. UGH! I hate to complain or whine, I just want to get back on track and its a lot harder than anticipated. Anyways, thanks for reading and even more thanks for replying.
One more thing, I am really considering going to see Dr. S. in Iowa and was wondering what everyones experience was like as far as IV's, staff, etc..
Hugs!
Eggs,
This is just my opinion, but it is based on alot of reading on this board, and what Jess' current AP doctor is proposing for her. I think you should push for the IVs. If this doc will even consider it, PUSH. You have done well on the IVs, you have the most serious case of Scleroderma that this doctor has seen. I'd say there is no time to waste, you need to throw all you can at SD, and IVs should be a part of that.
If this doc is not so experienced with IVs, ask them to consult with Dr. S in Iowa, that might help convince them that IVs are needed NOW, not later.
One reason that I believe that IVs are important is that Jess' current AP doc, Dr. F in Riverside thinks IVs are so important that we are going to try to desensitize her from a severe allergy to the IV Clindy on the 3rd day of her first round of IV treatment. He is proposing that we build it up from 10mg over time. That is going to take alot of time and effort. If Dr. F thinks it that important for an SD patient who has almost completely recovered (all symptoms gone except Raynaud's and that is mostly gone compared to the worst of it).
Again, this is just my opinion, but it is based on what I know two of the most experienced AP doctors in the US are doing for SD patients. With your positive history with IVs, I don't see why you wouldn't do it. Just tell the new doctor it is what you want, tell them that you don't want to have to go all the way to Iowa (assuming that you don't live in Iowa), but you will if you have to, this is your life we are talking about. Even if you will eventually get well on the oral AP, what if the IVs could speed that up by a few months or even a year, a year of your life in feeling well is worth quite alot I would think! I am ever so grateful that Jess has had the last year of her life fully healthy, I would not have wanted to sit around and wait and wonder if it could have been faster or more effective with the IVs.
Let us know if your new doctor is willing to consult with Dr. S, we can give you the contact information.
Cheryl Ferguson
Cheryl,
Thanks for the advice. I've read your daughters story and it is definitely an inspiration considering we are around the same age(I'm 21 and was diagnosed at 16). I do feel the IV's will speed up my recovery I just wanted other views. Thanks!!Eggs,
The IVs were a nice jump start for me when I'd hit a plateau on Mino. This may be one more case of the patient educating the doctor. Dr. S. will talk to your doctor if he/she needs more convincing.
Good luck……kim
Eggs,
My hubby was doing mino 200mg/day for six months when we decided to do the IVs (our own decision, as we don't have an APdoc) – my personal feeling is that the IVs made a huge difference in speeding up his recovery. We were seeing NO real improvements on the mino daily alone. GRanted, maybe the six months wasn't long enough to see a difference, or maybe he just needed the combo of mino and IVs. I would strongly recommend doing the IVs again if it helped you before. My hubby did the 2xday for 5 day thing, then followed up with a booster for about 5 months (2/day for 1 day) – I am hoping he continues the booster ones (even though he missed about 4 months) because I think he should do a full year of IVs to have the most complete recovery possible. By the way, the doc that did his IVs conferred with Dr. S. to get the protocol – it was no big deal – a couple of phone calls and faxes and everything worked out. Good Luck to you!!!
hi, iv's are very important with sd, you do have to fight to get the results you need, but don't give up. Dr. S in Iowa is wonderful, the whole atmosphere down homey.
Absolutely demand the I.V's! Sclero. without I.V's is insane. My I.V.'s are the biggest reason I've seen any improvement at all and at the very least the one reason this disease isn't progressing as much as it could. I get them monthly for a week and I swear by them. Any doc who doesn't at least let you try them, I would really have second thoughts about.
All the best,
Steph
Hi Eggs,
Absolutely get the I.V.s ! I have seen two AP docs and the one that we are familiar with here from Ida Grove, told me that the severe ones should have I.V.'s every six months. When I could hardly shuffle into my regular AP's clinic and my skin was getting tight, the I.V.'s pulled me out of it, for the most part. One guy with advanced SD did not get on AP and he passed away. After that, I had leverage with my doc and insisted on the I.V.'s for a time. I was not going to lie down and die with young children at home.
To address this with a doc, you have to be firm and have information in hand. That is what I did with the doc I saw. Be forceful in a kind way. Remember, most docs do not want to be told what to do. I choose my words mosre carefully these days.
Diane
I've had no experience with Flagyl and minocin, but have had good success with minocin and clindy IVs. I get clindy in a 10 series in 5 days once or twice a year (depending on how I'm doing), and get a clindy IV every other week. Minocin is 100mg twice daily. So far, so good!
how advanced is your sd? that seems like a lot of iv's, but i suppose we are to go by how we feel? please let me know, i'm going to start on iv's again soon, and not sure the best protoccol to take. thanks.
Hi Tish,
Not sure if your question was for me, but I'm answering 🙂 I began AP upon diagnosis, minocin only. IVs began 2 months later with a visit to DrS. He then recommended IVs monthly for 6 months, then upped them to every other week. My skin involvement was tremendous, fast and furious from the beginning. IVs are, of course, in addition to minocin.
Interesting to me was that last year on an extended vacation, I took oral clindy weekly for a month, and didn't do as well. However, MANY people do oral clindy and no IVs and have reported doing quite well.
Bottom line, I believe treatment is patient/disease specific.
The topic ‘ Opinions Please’ is closed to new replies.