Question regarding the port for IV Clindamycin

[GayG]

@cavalier wrote:

What state is Dr K. in if you dont mind Gay? Thanks Jill

sorry for the delay I just saw this…she’s in Lufkin, Texas

[cavalier]

Duh! – I realized I never asked about how long it takes of time per day for the IV’s? I just know it is typically twice a day with Dr S. for a week – can anyone give me a ballpark for how long each one takes? I am considering bringing up a pup who needs some watching & med’s & am trying to see how long I maybe away to decide what maybe best for her.

Thanks ! Jill who is on the road to say good ridance to SD

[Davit]

It is called a picc line and goes in in the upper arm on the inside. It is approximately 38 cm long and stops in a large vein just short of your heart. The reason for this is so it doesn’t burn the walls of the vein.
I have had lots of these. Procedure takes about an hour in the hospital. Your arm can be frozen but usually is not necessary. It can stay in a year if you flush it once a week. You can not feel it once it is installed and except for being in the way somewhat it is no problem. Mine all had extensions as I did my own injections. If you need more information just ask.
Davit.

[kater]

Nancy, when you get the saline or hep lock in your arm for the week, where do they put it and do you find it interferes with your activities much?

Davit,
I am searching and searching for an IV doc in BC. If I could just get someone to write the script I could get the home infusion service set up. Was your IV for your RA or the staph infection? Just wondering if you have any leads on a BC doc that would be good with IV Clindamycin for SD. Send me a PM if you have one!
thanks
kate

and to someone, sorry can’t remember who, who said they had great improvement in SD with one round of Iv’s, that is very encouraging. At this time I can only find someone outside my home province and can only go once or occasionally. I guess it is still worth doing!

Systemic Scleroderma since 2010. Lyme and Myco P. AP and many other antibiotics and treatments since Nov. 2011. Presently mostly in remission other than fatigue.
Teva Minocycline 100mg a day. Dessicated tyroid, LDN 4.5, LDI, hawthorne, curcurmin, berberine,, caprylex, reishi mushroom, liver protect, zinc,, fish oils, magnesium, vit K2, d3, bcomp, E, C

[cavalier]

Thanks Davit for the info ! I hope you are doing well – are you still continuing the IV’s?

Best – Jill

[Davit]

Home IV is common in the Prince George area but I don’t know if for Arthritis. Mostly for Cancer and Staph infection. Both of which we have a lot of. We have no Rheumatologists in the north and the doctors of internal medicine covering Arthritis won’t do it.

I am at present on Pills, Keflex only. Arthritis is still in remission but I will never get rid of the Staph totally as it is living in my knees where antibiotics can’t get too. Keflex is only a control.
Taking Minocin for Myositis now.

I would not hesitate to do another Picc line again if I needed to.
I Did get to do Clindamycin by IV around eight years ago but only once and only for a week when it was decided it wasn’t helping the Staph. It did help the Arthritis though.
Health care is clamping down on treatments that they can’t prove work.
Closest Doctors that I know of that are doing antibiotics are in Calgary and I can not find my list. I still have a contact person who may know though.

Davit.

[A Friend]

@cavalier wrote:

Anyone who has had the IV’s that can tell me a bit more on this port please? Thanks Jill

I had a depressing visit with one of my 2 Rheumies – who not only wont support the IV – I figured as much, but went so far to say i should stop the minocycline that I got the 2nd Rheumie to give me yet she has nothing to offer that is proven to work- so I dont see why – she mentioned vasculitis as being a risk to minocycline & of course lupus like feeling but I told her about the Herx that is when she mentioned Vasculitis seeing that in 2 of her patients who were on minocycline BUT I have read of vasculitis in SD without being on AP so I dunno it is that simple. For her saying no proof in studies then how can she say so completely that the AP caused vasculitis – I seemed to have hijacked my own thread here LOL but she says my SCL 70 & Cardiolipin fctors mean it is serious then says i may remain without more internal involvement for years almost poo pooing it. Yet Dr Virginia Steen says anytime there is a positive SCL 70 that means rapid progression & lung involvement – I think the better answer would have been impossible to know rather than give hopes that I may stay on a plateau for years – she to me might as well been reading tea leaves & those maybe better. She seemed to be talking out of both sides of her mouth at the same time. Imagine that.

Hello Jill,

So sorry you are going through this uneasy, difficult time. What you’ve been told by one of your “Rheumies” sounds familiar to so many of us. It seems rare that any of them give any encouragement when AP is mentioned. But, sounds like you’ve read about Dr. Brown’s work in the books — and perhaps read some of the patient stories/histories on this Board. Maz or Lynnie, or others can probably steer you to an AP physician who can prescribe AP IV’s for you, and probably would then be able to have a local home health nurse give you the IVs. Don’t know where you live, but this has been done by numerous patients over the years. One patient wrote that she had her RX for IV med filled at Wal-Mart, and then the nurse came to her home and just administered it.

I received IVs about every 6 months in Iowa when I began, twice a day for five days. The technicians at the hospital who gave these to me during those beginning trips usually had a hard time getting the needle in my veins, too. They said my veins “rolled”, and it usually took several tries by at least two nurses. They also suggested that I needed to drink lots of fluids before each IV, and hydrating ourselves is supposed to be helpful. Probably the 2nd trip to Iowa, we decided to put the port in so we didn’t have the vein problems. After that time, I was doing so much better, and so were my veins, and we never used the port again.

Hope some of this will be of help, and also encourage you. If you need more encouragement, besides the great stories by patients on our RBF BB, on http://www.rheumatic.org there are also many patients diagnoses/stories (links to them on the Home Page). Patients at both sites are always glad to help and encourage.

Keep reading and learning. You will be a “pro” before you know it.

AF

[Davit]

Please be specific when mentioning ports to keep from confusing. Technically a port is the little blue cap that the line or hypo screws into.
There are three types of IV A saline lock, a central line, (no longer used in Canada) and a picc line. There are also four methods used for home IV. A timed pump, gravity, (same lines, no pump) A full time metered pump. (small and heavy, you wear it full time and it pumps a metered dose over 24 hours. And IV push. (The dose is in a 20 cc syringe and you put it in over 2 minutes.) When I first started home IV I had to mix my own, now it comes premixed.

Davit.

[kater]

Hi Davit
thank you for your reply. You have cleared up a lot of my queries about the IV therapy. I have had no luck so far finding an IV doc in BC for my SD/myco p but am booked to see someone in Calgary in April if I don’t find someone in the province first. I have $ signs in my eyes 🙂 and of course it can only be an occasional thing because someone outside the province can’t prescribe for home therapy. Frustrating! Sounds like you have been on this journey for a while. My best to you!
kate

Systemic Scleroderma since 2010. Lyme and Myco P. AP and many other antibiotics and treatments since Nov. 2011. Presently mostly in remission other than fatigue.
Teva Minocycline 100mg a day. Dessicated tyroid, LDN 4.5, LDI, hawthorne, curcurmin, berberine,, caprylex, reishi mushroom, liver protect, zinc,, fish oils, magnesium, vit K2, d3, bcomp, E, C

[cavalier]

thanks AF ! for some reason i had not seen your post til now very helpful. best – Jill

[mlouise]

Hi!
I am late getting into this conversation. but I will relate my experiences with clindy IV. I am in PA and could not find a doctor in the state who would do the IV. Finally someone one on this site recommended Dr B in Philadelphia. I had two IV’s done by him using the vein at the elbow joint. I had 5 days once a day. Once in Dec 2010 and once in March 2011. I had a difficult time with the vein closing up and also not being able to find the vein. The nurses were pretty bad at it, but Dr. B was an expert. He seemed to know just what to do. They also wrapped my arm in hot water bottle and blankets, etc. It did work.

In Nov 2011 I wanted to get another IV. Dr B offered to send me the IV and then I could get a local nurse to do it in my home.
(We are 3 1/2 hours from Phillie and the turnpike tolls are ridiculous!) I was worried because of the vein trouble. I contacted a neighboring doctor who decided to put a port in my wrist. This worked very well. He came once a day and adminstered the Clindy and I had to flush the port every six hours in between. We were both very happy and relieved that this worked very well for me.
I hope that you can find someone who will do it for you. I know that I searched for about six months. i could find doctors who would give the oral, but no IV. I was just about to fly to Iowa to see Dr. S when I found Dr. B in Phillie. I hope this helps. Louise

[Maz]

I don’t know if this will help anyone on this thread, but I just started IV clindamycin yesterday. My new LLMD installed a line in my elbow and did the first IV in his office. When he was satisfied I was okay (no overt allergy or other probs), I was sent home with my IV “bottles,” along with plenty of saline and heparin flush syringes. The system works GREAT.

My IV clindy was ordered from InfuserveAmerica.com and is contained in self-pumping, portable bottles, so I can pop the small bottle into a pocket and walk around and do what I need to do without any probs while it infuses the clindy over a period of about 1.5 hours. (Instructions for self-home infusions at the link below). Upon completion of the 5 day series, I’ll just get my daughter to pull out the catheter for me. So, no need for a home nurse, at all. Of course, this may not be a suitable program for everyone, especially folk with bad veins or needing medical oversight for some other issue, but it is easy, cost-effective solution for some. Just need a doc who is willing and open to give it a go…and it’s pretty fool-proof from the patient angle as not much can go wrong with proper instruction for use by the doc, the pre-filled syringes and screw-on connectors. Just need to watch that the IV site remains healthy looking.

The “IV bottles” are pictured at the following link on the right of this page:

http://www.infuserveamerica.com/index_files/Lymediseaseeclipsepump.htm

Infuserve called me when they received the prescription and I paid them $216 for 16 bottles of clindamycin (900mg). I’m doing 2 infusions on one day per week thereafter, so the extra 6 bottles are for the three following week after the first 5 day series. Fed-Ex charges added about another $70 as the clindy needs to be kept ‘on ice’ and shipped overnight. They would either ship them direct to me or to my doc’s office. I had them shipped directly to my doc, so he could check everything shipped was in order and then he just installed the infusion line for me, provided what I needed in terms of the pre-filled saline (20 count) and heparin syringes (10 count) and sent me home with what I needed for the self-infusions.

My doc will just charge me for inserting the line and the saline and heparin syringes, which should be pretty reasonable, considering he only charges $65 for IV Myer’s and Glutathione pushes in his office. So, for people on a budget who have an open doc, just putting this out there as a possible solution for getting your IVs at a reasonable cost. 😉 It’s so great to have the freedom to do these in the comfort of my own home and to run the infusions at times that are convenient to me.

Lousie, not sure if this is of any use to you, but Walgreens also has a home infusion service and they will send nurses to your home to install lines and do infusions. Not sure of their prices, but this is also a possibility for anyone who wants to do home IVs, but needs nursing support:

http://www.walgreenshealth.com/wagclient/consumer/servicesandsupport.jsp?navSelector=Infusion+Services&leftnavpage=is&page=services

Hope this info helps someone!

[Davit]

Just a note.

If you are doing your own IV. Try to get clorahexadine wipes instead of alcohol. It kills on contact.

Davit.

[Author]

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