Jump to content

Starting home fluids and lupus question


Recommended Posts

So my hematologist just ordered fluids at home. My husband is a nurse and will put the IVs in, right now up to 3 times weekly. I haven't tried this before and am curious to see how much it helps. If anyone has any tips for starting this therapy, I would appreciate it. I don't expect to use them that often and want to keep my veins useful. I know I plan to tape a heat pack on the fluids for now, to warm them a little.

 

My ANA is homogeneous at 1:160 which hasn't given me a diagnosis but which the hematologist says "means" lupus. It was always negative before. My IG2 is high which he says indicates bacterial infection, but none that he has tested for (tickborne, etc.). My white count is a little high, my RBCs a little low along with my hematocrit and some other stuff. My low iron has been fixed for a year or two so I don't know why I am a little anemic. Does anyone have any experience with dysautonomia (without a diagnosis, I just keep coming up with "autonomic neuropathy" and "dysautonomia" in my charts) and lupus? I haven't heard of an association between them but there seem to be people here with both. I don't have a rheumatologist yet... just had some more specific testing done today. I'm not really sure what to think but this doctor promises he is not giving up on me until he gets answers. He is absolutely wonderful, and smart.

Link to post
Share on other sites

I wish I had your husband and your doctor!

I am a GP myself & have occasionally been able to get a friend to give me fluids at home but it is rare & for logistical reasons has to be run quicker than I'd like. 

I would really love a port but in the UK this is really unlikely to happen. 

The only tips I have are trying to make sure you are as warm and hydrated as poss before starting (neither is easy), warming the veins with a hot water bottle or something, and if it is just plain saline in the bag with no additives, a litre bag can be microwaved for 2 mins to take the chill off. 

My veins are only really visible at all in the evening after I have been chugging salt & water all day then ridden on my recumbent bike - if you are like me then having the cannula put in and secured at night, even if you don't plan to run the fluids until morning when you will likely get most benefit from them, might be best rather than your husband stabbing around in the morning when you have no veins. 

Best wishes I hope it brings you some relief. 

 

Link to post
Share on other sites

I get regular IVIG infusions and now have a port, but when I used to get it from the vein in my hand, the cold IVIG used to make my entire arm ache. One of the nurses used to get me a disposable heat pack. You can buy them in the store, I think they sell them as hand warmers for camping or outdoor activities in the winter. I would put one on top of my hand where the needle went into my vein and it helped a lot. Sometimes they would also put it on my hand before they stuck me, to help find a vein. 

Running the saline slow may also help, in my case if it’s too fast I end up urinating most of it out. The saline I get after the infusion helps me the next day, but it wears off pretty quickly. Hopefully three times a week will help you feel better.

Link to post
Share on other sites

Hi - I currently get 2 IVs a week at a Hydration Clinic as ordered by my OB.  It does seem to help me a lot.  Before I was pregnant, I was getting IVs once a week for the past 2 years.  The IVs have helped significantly with my blood pressure and HR.  They also decreased the POTS "attacks" and helped my energy by about 5-10% overall.   I was tested and found that I have very low vasopressin, so that may be in part why the IVs are helpful.  Now that I am 22 weeks pregnant, I seem to need the IVs more and the effects don't last as long.  There is definitely a hormonal component to the illness.  

I am sorry about the lupus, I don't know much on the topic.  I will say, however, that I think IVs are a great treatment for POTs and CFS.  There is a lot of evidence based research in support of the IVs for our condition.  I'm happy to send you some articles if you would like.  :)

Link to post
Share on other sites

Thanks... i still don't have the fluids or supplies. My retail pharmacy is not too caring and if they couldn't get the stuff, they wouldn't have told the doctor ordering it.

I know this could be very helpful and might give me informal confirmation that I have low blood volume. Plus, it's pretty safe. 

Does anyone get these supplies mail ordered in the US? I had trouble finding a source but am calling my insurance today.

I'm looking forward to having this tool for those "on the floor and can't sit up" days, and also before trying to hike, to see how helpful it is. I don't use ERs so I have never had this when I needed it. I bet my vasopressin is low as well. 

Link to post
Share on other sites

My ANA is positive too. I had speckle pattern, which does indicate lupus. I asked my Rheumatologist about this back when this first happened to me. This is what he told me. Other Rheumatologist may have a different opinion. 

At first a positive ANA with no pattern suggestes something called Undifferentiated Connective Tissue Disease (UCTD). If a pattern develops, it is another clue toward a sero-negative diagnosis of a specific autoimmune disease. All Rheumatologists don't acknowledge Undifferentiated Connective Tissue Disease and won't treat it with DMARDs (Disease Modifying Anti-Rheumatic Drugs). Often, they will tell you there is nothing wrong yet.

I was lucky that my 3rd Rheumatologist acknowledged UCTD as a real ailment and put me on DMARDs. Once this happened, my dysautonomia stuff started to get a little better. Since I had the speckled pattern, they started me on lupus drugs, like Imuran and Cellcept. I think you are lucky too because you have a doctor willing to make and treat a sero-negative autoimmune diagnosis. Because your ANA pattern is nondescript, you may end up trying several meds before you find one that 'hits' the right spot. Since you have a Hematologist, you sound like you have the right person looking at T cells and B cells. That stuff gives me a headache!

Good luck with your treatment. If you want to know more about my experience with dysautonomia, then UCTD, wait- it might be lupus, okay- now it is Lupus, hey- where did the lupus go(?), back to UCTD, now it is RA (@!$#), let's call it Mixed Connective Tissue Disease now, just let me know.

Kim 

 

Link to post
Share on other sites

Thanks. The follow up testing is still positive (I think still homogeneous) but the DNA testing he sent out hasn't come back yet. I don't know a lot about this rheumatology stuff but I would welcome more education. I get a lot of colds and weird fast moving cellulitis if I get a tick bite, so I am not too excited about suppressing my immune system. My neck, back, and shoulders are really my achy all the time, but I wouldn't say my joints really hurt unless I injure them. I fall so often that it is hard to tell.

 

The doctor is a hematologist but he has special interest in immunology, so I think he's extra good for whatever I have. My RBCs, HCT, etc. keep getting lower when they were always mid range before, but I am not destroying the cells. He doesn't think I'm making many of them. 

 

I have a few other clues like elevated WBCs and IG2. He has run about 50 lab tests and most were okay (including T cells... and HIV!). I have a lot more results pending to include mitochondrial testing.

Link to post
Share on other sites

I did all of that too, incuding mitocondrial and HIV, even with no risk factors. They are thorough. I think I have read some studies that EDS throws out false positives for lupus, so keep that in mind. Your mention of falling made me think of that. 

I wish you luck. That nebulous autoimmune diagnosis is difficult until it really shows its true identity. You are right about suppressing your immune system - I get sick constantly. People say take vitamin C and Echinacea, but that works against the meds you are on, so it isn't smart to do. A friend of mine ended up in a bad flare because she started taking tumeric. Make sure your docs know EVERYTHING you are on. 

Hope everything turns out to be easily manageable. 

Kim 

Link to post
Share on other sites

If you're in the US, the problem with getting the supplies might be the overall shortage right now caused by much of the supply being produced in Puerto Rico. My IV hydration clinic and my regular doctor have both had issues getting their regular supplies.

Link to post
Share on other sites

I know... it doesn't help that the flu is widespread too. Both agencies haven't had this as a factor...the retail pharmacy doesn't deal with this, and the specialty pharmacy is just slow starting me as a patient. Inde they do I may have a problem with the shortage. I have a liter bag, my first, running right now... it was given to me. So far so good! I was sweaty and nauseous early this morning before getting stuck and those are gone. Yay!

Link to post
Share on other sites

I did a liter of normal saline over about 3.5 hours. The idea was 4 hours for the first time, but I hadn't had to urinate at all after 800mL was in so figured I could speed it up a little, and it was fine. I hardly peed any out all day which is weird... If i drink 500mL of even electrolyte solution I pee most of it out quickly. I suspect that's part of my problem... whatever I drink, even if it's isotonic or hypertonic, it goes right out. As I suspected, IV fluids stick around, even though I don't understand why. Next time, I'll warm the bag more (I was hot when it started so I didn't feel like it... later I was freezing) and I want to get a pole so I'm not as restricted. But, I do think we'll speed up the rate so it won't be as much time spent limited because of the line.

 

I went for a walk afterwards and it was much less difficult on me than usual, my heart rate was better, and I haven't been as orthostatic. I even got hungry while the fluids were running!

 

Good luck with the test... the closest place that offers it is pretty far, but I would like to do it.

Link to post
Share on other sites

Join the conversation

You can post now and register later. If you have an account, sign in now to post with your account.

Guest
Reply to this topic...

×   Pasted as rich text.   Paste as plain text instead

  Only 75 emoji are allowed.

×   Your link has been automatically embedded.   Display as a link instead

×   Your previous content has been restored.   Clear editor

×   You cannot paste images directly. Upload or insert images from URL.

×
×
  • Create New...