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Hi All,
I'm into my fifth week of doing AP, jumping it up to 100mgx2 per day just last thurs.
Does anyone think that I should also consider the iv doses of clindamycin. If there can be an advantage to the iv treatment being involved along with the oral minocyclin then why wouldn't I try it.
I'm in two minds and not quite sure which path to take.
going ok so far on minomycin100mgx2 per day. The SD is still marching on leaving me with some strong SD symptoms – swollen/puffy feet and lower leg, the skin is thickened and flushed colour. Hands are quite thick with reduced finger movement and strength. It is progressing my face with a general soreness. I have a sore throat and a unusual feeling near my stomach/oesophagus. lethargy plus plus.
How helpful would the iv treatment be?
Cheers Wayne
Systemic Sclerosis....rapid onset 2010.
Started AP January 2011.
Multiple meds during treatment, including IV Clindamycin every 2 months for 5 days.
Now.....disease in remission....meds: Mimomycin, Clindamycin IM 3 monthly,
5 days Azithromycin 6 monthly.
Very well now....enjoying life.Hey Wayne and welcome to the Roadback forum.
Five weeks into the program is probably way too early to expect much in the way of results. I had a rapidly progressing case of SD and it took about four months of Minocin to stop the progression and then slowly, ever so slowly, start reversing the damage. I'd hit a plateau after about a year of Minocin and went to Iowa for the Clindy IVs which got things moving forward again. After the IVs we added in Zithromycin with the Minocin and saw even more results. When progress stalled out yet again, I realized Lyme was not only part of my problem, but actually caused it. After about a year of Lyme treatment I'm now doing really well with only a few SD souvenirs. It's all very individual and what worked for me may be totally wrong for you so it sure is nice if you have a doctor welcoming your input and willingness to be flexible.
You'll be the best judge of when it's time to shake things up with abx changes. I don't think it's a bad idea to pursue the IVs if you have a doc lined up, but I wouldn't panic if you don't because it typically will take longer than 5 weeks for the Minocin to work it's magic.
Wishing you all the best in your treatment. You picked the right program. 😉
Take care…..kim
Wayne,
I agree with Kim that five weeks is very early in the treatment. I believe that it is a personal choice that mainly factors time and expense. For me, if I were facing SD (and I did with my daughter) I would want to pursue the most agressive protocol, and the IV Clindy is certainly that. I would want to do what was needed to get the upper hand on the disease progression. That said, IV Clindy is ALOT more effort than oral minocycline. It is difficult to obtain both an RX and to find a place to administer. It is time consuming too. But, if it were me, I would do it if I were in your shoes. Even with the IV Clindy it may take some time until you are fully able to return to work, but if the IVs shortened the time you were off by even a few weeks, I would think that would be worth it. When I was in this same situation, I wanted to do the IVs for my daughter for several reasons. First the sooner she showed any sign of improvement, then, maybe I might be able to eat, sleep and breath (I WAS STRESSED). Secondly, we were approaching her senior year of High School, in her state of pain and fatigue, she surely would have not been able to keep up with the academic standards that she had achieved prior to her illness. As the school year was starting regardless of how Jess was feeling, she needed to be well as soon as possible. She did 3 days of IV CLindy in late June, started the oral Mino in early July and was feeling OK by the time school started in late August. Please note, I am the most impatient person I know, that is not always a good thing with this treatment, but I was going to stick with it no matter how long it took. My only goal at the time was that she live. Based on the prognosis, I had already really given up on the hope that she would ever return to her sport (swimming) or go away to college. I just wanted her to live. I accepted the fact that she may never be fully healthy again. I am very thankful that this treatment surpassed my expectations and she has fully regained her health and is not only still alive, she is living life to the fullest.
Cheryl
Hi Wayne,
Two Recommendations:
1. Attack SD with AP as early and as aggressively as you can. After reading as many SD AP testimonials as possible, I have seen the pattern that early AP can knock SD off it?s track. This appears critical in order to prevent permanent damage. This is YOUR life you are talking about. Additionally, there are a few challenges to properly taking oral minocin (or minocycline) such as on an empty stomach and at least 30 mins before lying down, and far away from Mg, etc. However, you can be sure you are getting your AP with an IV (hey, that rhymes!)[/i].
2. Keep a daily log of your little improvements. These improvements can be so gradual that you may not even notice that you are getting better. AP will get you better, but it takes a long time. You need to be patient and you need to endure. Take monthly photos or videos of yourself. Over time, being able to see your own improvements will provide great encouragement to you.Diffuse SD since Apr '07
AP since Feb '08
100mg Mino twice daily
Stopped Clindamycin IVs Aug 2019
"No one should profit over someone else's illness"Hi Wayne, I did the iv. treatments and I do think that it did help. I would say, go for it! Good Luck to you!
Thank You, Linda
I have been on oral generic mino, Watson brand mostly, for almost three years and it has worked well for me. If I had to do it all again I am not sure if I would jump to the IVs or not. I don't like to be hooked to things, every time I get an IV I really dislike it. Certainly they are an option and in your position I would look into IVs for sure just not sure what I would do. I have found the oral mino to be a very easy treatment to be on. If I did not have a good response with the oral mino I would guess I would ramped things up with IVs. I suppose my point is the non IV route worked for me. Should I have made the jump to IVs I don't know. There certainly is a case for being aggressive.
I have not had any problem taking my mino, it gave me my life back and I find that has been a pretty good inducement.
Hi All
Thanks so much for the replies. Its alot to take in at this stage and am trying to absorb everything to reflect upon. If I do decide to try the IV treatment, it would be difficult to organise here in Perth, and that would really test just how understanding my Rheumy is. One of my most immediate challenges is getting back to work on the 27th Dec to do my paramedic work – perhaps I need to be the patient 😛 Might be hard over these coming months trying to work before I see improvement. Thanks heaps to everyone for sharing your stories and experiences, as it is so important to all of us when making decisions concerning our wellbeing.
Cheers
Wayne
Systemic Sclerosis....rapid onset 2010.
Started AP January 2011.
Multiple meds during treatment, including IV Clindamycin every 2 months for 5 days.
Now.....disease in remission....meds: Mimomycin, Clindamycin IM 3 monthly,
5 days Azithromycin 6 monthly.
Very well now....enjoying life.Wayne,
Hello, and glad you found RBF BB. Those who have your same diagnosis will be better help than I. But one thing you posted caught my attention:
Wayne wrote: I have a sore throat and a unusual feeling near my stomach/oesophagus. lethargy plus plus.
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Hi! My dr has me take a baby asprin a day. I also take Advil as needed which is not daily maybe a couple days out of the week. I havent had any stomache issues at all….however, I do get heart burn or acid reflux not sure the difference and I take nexium for that! Not sure if this helps….but thought I'd throw it out there.
[user=1894]Wayne[/user] wrote:
Hi All,
I'm into my fifth week of doing AP, jumping it up to 100mgx2 per day just last thurs.
Does anyone think that I should also consider the iv doses of clindamycin. If there can be an advantage to the iv treatment being involved along with the oral minocyclin then why wouldn't I try it.
I'm in two minds and not quite sure which path to take.
going ok so far on minomycin100mgx2 per day. The SD is still marching on leaving me with some strong SD symptoms – swollen/puffy feet and lower leg, the skin is thickened and flushed colour. Hands are quite thick with reduced finger movement and strength. It is progressing my face with a general soreness. I have a sore throat and a unusual feeling near my stomach/oesophagus. lethargy plus plus.
How helpful would the iv treatment be?Cheers Wayne
Hi Wayne I am in Perth. Kim is right you need to give the mino time to get working before you go off with something else. However it is a marvelous thing the clinda and helped me wonderfully but give yourself a chance. My very dear friend has SD and she is doing really well on the Mino plus Zithromax every 10 day. half a 500mg. tablet. You have to cut it. The drugs are different here and the only mino we get you probably need to take with a small amount of milk or you get gut problems. It is pretty strong tablet. Make sure you get the Sigma and not let them push the Akamin onto you. You can email me if you wish the address has just changed to hearle.rose@optusnet.com.au Also worth mentioning is the Lincomycin intra muscular which is on the PBS instead of the Clinda IV the Linc. the Clinda is not they are sister drugs here
I used two day on and one day break with the Lincocin and did it myself. They use the Zithromax in the States for ENT infections so sounds like you would benefit from that on a 10 day basis. Most of us seem to have the mycoplasma problem here. I do not know why. Hope this info helps.
Thanks Rosemary,
My wife and I have been away for a week in which time my SD continues to rapidly progress, leading us to have made the decision now to peruse IV intervention. We are now trying to work our way through the minefield of medications here in Perth, and wondering whether we should go down the line of Clindamycin instead of Lincocin simply because we know the Clindy results better and not much about the Lincocin. Of course all of this has yet to be run past my rheumi on my next appointment early January. We are also wondering if the Lincocin when administered IV, if it is given in the same dose setup as the Clindamycin. So many questions when playing doctor!
Sometimes I wonder if I might just simply make an appointment, jump on a plane and go to Victoria and see Dr D who appears to have loads of experience in AP.
Cheers Wayne
Systemic Sclerosis....rapid onset 2010.
Started AP January 2011.
Multiple meds during treatment, including IV Clindamycin every 2 months for 5 days.
Now.....disease in remission....meds: Mimomycin, Clindamycin IM 3 monthly,
5 days Azithromycin 6 monthly.
Very well now....enjoying life.Hi, I never heard of lincocin. I did have clindy treatments several times and I do think that it helped. I would try agressively to stop the progression.
Best of luck to you
lindalou
If you are a paramedic, can't you hook yourself up? In America, sometimes care givers (like spouses) are expected to do iv's on the people they take care of. The clindy itself, once you get the prescription, I believe is fairly cheap. Hey, I'm sure crocodile dundee would do his own iv's :), and then cut off the lines with that big crock killing knife of his when he is finished
The mechanism for how NSAIDs (like aspirin) cause stomach damage is well understood and easy to avert in this age of proton pump inhibitors—Thomas Brown, alas, didn't have those marvels. The NSAIDS tell the stomach to produce less mucus and with the less mucus the gastric acid ulcerates the stomach lining. One solution is to take a proton pump inhibitor (like omeprazole, i.e., generic otc prilosec) which drastically lowers the gastric acid. Another solution is to take the NSAID in suppositories (which lower the peak concentration of the NSAID in the stomach). For extra queasy stomachs, you can do both.
By the way, don't skimp on the probiotics, two hours or more after the AB. JBJBJB in this group recently got diarrhea caused by c.dificil and almost died
[user=1894]Wayne[/user] wrote:
My wife and I have been away for a week in which time my SD continues to rapidly progress, leading us to have made the decision now to peruse IV intervention. We are now trying to work our way through the minefield of medications here in Perth, and wondering whether we should go down the line of Clindamycin instead of Lincocin simply because we know the Clindy results better and not much about the Lincocin. Of course all of this has yet to be run past my rheumi on my next appointment early January. We are also wondering if the Lincocin when administered IV, if it is given in the same dose setup as the Clindamycin. So many questions when playing doctor!
Sometimes I wonder if I might just simply make an appointment, jump on a plane and go to Victoria and see Dr D who appears to have loads of experience in AP.
Hi Wayne,
This may not be much help or tell you any more than you already know, but here is a little write-up about Lincomycin (brand = Lincocin) in Wikipedia which explains Lincomycin's properties and very slight difference from Clindamycin (aka Cleocin):
“It has been structurally modified by thionyl chloride to its more commonly known 7-chloro-7-deoxy derivative, clindamycin.”
http://en.wikipedia.org/wiki/Lincomycin
It's bascially the same antibiotic as clindy, “a sister” of it, as Rosemary mentioned.
That said, this is still very early days and, as Kim mentioned above, 6 or 7 weeks into AP would normally be very early to be seeing any kind of tangible result. We hear numerous sclero patients here who share that their symptoms continue to progress for some time after beginning AP. In this sense, sclero is a bit of a freight train that has built momentum and takes time for that momentum to slow down and start backing up and this slowing down of progression will be different for everyone.
These early days can do a number on us, as it feels a bit like a leap of faith when, to all intents and purposes, everything looks like there are no improvements. But, if you read some of the testimonials on the main site, you will read about how long it took for some folk to reach remission. Richie, for instance, only used oral Minocin, but acheived remission and regression of all his most troubling symptoms within 5 years and has remained in remission. This really is a longterm therapy and the first year or so can be a bit unnerving, wondering when the freight train will slow down and improvements will be seen.
Your idea to travel to see an experienced physician isn't such a bad idea! Many here in the US believe their health to be a worth the investment will do this. If they have a local physician who is open to helping then all the better, because often the more experienced physician will continue to consult with the local doc on how to proceed and what to do if hiccups are experienced along the way. So this kind of thing is definitely worth researching to get you set on the optimal road back for you.
Another Aussie forum user, “BrendonG,” has sclero and is doing IVs, so if you haven't connected yet with him, you might like to send him a private message to ask how he has dealt with getting the IVs sorted.
Hope something here might help a bit, Wayne…hang in there. AP is often described as a three step fwd and two step back dance all the way, but these early months are unnerving and you're not alone in this. I'm sure others here with sclero will chime in and let you know how it's gone for them as they look back in retrospect.
Seasons greetings, Wayne, to you and your family. May 2010 be a year of much happiness and greatly improved health!
Peace, Maz
Wayne,
This is following Maz's reply to you. In Maz's post, she said:
“Richie, for instance, only used oral Minocin, but acheived remission and regression of all his most troubling symptoms within 5 years and has remained in remission. This really is a longterm therapy and the first year or so can be a bit unnerving, wondering when the freight train will slow down and improvements will be seen.”
If you communicate with Richie, I know he would tell you this: he takes a large number of probiotics daily, which I believe is VERY needed with our being on AP and our already compromised intestinal systems. (Usually these good organisms are manufactured in our gut. When we become ill, along with other things gone wrong, our good organisms/flora are displaced by the multification of the “bad/unfriendly” organisms; and also by antibiotics, which kill the bad but also a lot of our good flora. The good organisms, when we are healthy, manufacture our B-vitamins, which we desperately need for many, many bodily functions.
So, just wanted to bring your attention to the need for probiotics and the good tasks they perform, which can help get us well.
By the way, I got worse the first month or two or three after beginning AP and the IVs; but this was caused by much die-off which needed to be gone. The 4th month was like being reborn! And I was off and running for about 7 really good years.
Good luck to you on this road — I've been around for a while now, and I've not known of another one that has the kind of remissions that AP has.
AF
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