Heparin Injection Therapy

[Dainty]

A few months ago I began taking heparin injections to see if it would help. I understood that it is not a curative measure, but may improve symptoms, and I figured it was worth a shot (ha ha). I didn't do testing for hypercoagulability, since my doctor basically said that either way it went heparin could end up being helpful. Also I had a history with sublingual heparin, which helped considerably with brainfog however the sublingual route became too painful for me so it was ceased years ago. I did my research and took the plunge.

So far my experience has been definitively positive, though not what I was expecting. I have no change in brain fog, however it helps significantly with short-term memory problems. Before my daily injection my short-term memory is absolutely shot, as in, I'll have the full syringe and ice pack in front of me and such and then forget about it for a few minutes, notice it again and think, "Oh hey, while I have this stuff out, I may as well do my daily injection..." and then, "Oh yeah, right, that's why I got them out in the first place." At first I was concerned the heparin was making my memory problems worse, until I noticed that all the issues I was having were always before the injection, never after.

The other very significant thing is that it alters my state of fatigue. I'm not quite sure how else to put that. I still feel significant unrelieved exhaustion, but some days after injections I'm getting up and walking around just because I feel like moving...and it feels good to move around. And tasks such as raising a glass of water to my lips become easy instead of the toiling difficulty they are otherwise. I've even got sore muscles from too much exercise without having PEM!!!! Oh, that's huge for me, I can't even begin to tell you. I'm housebound and about 90% bedridden, so this is a very significant change for me.

But it doesn't last all day, and I still have bad days. Some days there's a night-and-day difference, where before the injection I'll be doing horrible and within 15 minutes afterwards I'm dancing around just because it feels so good to move. Other days, the injection doesn't seem to make much of a difference at all. I'm still trying to figure out the patterns, but it seems that when I'm at my optimal, that is, well rested, nothing stressful going on, etc, then there's the significant difference, but when I'm recovering from something major the heparin appears to make no difference. However, again, I'm still not sure.

It's a strange kind of improvement, because on the one hand I don't actually feel a whole lot better, I just have a higher capability of function and short amounts of exercise at key times is enjoyable. This is huge for me, but I want to emphasize that it's no panecea. Yesterday I overdid it with an animated hours long conversation with someone, by the end of which I was sweating profusely and vomiting foam...my body was really needing to rest. I had to take pain meds to be able to sleep. But today, even though a whole side of my body is sore from sitting in an awkward position, I am not suffering from PEM as I expected to. I'm not unaffected - pain levels are higher and I'm sweating like crazy with a low grade fever - but my fatigue is a more functional kind of exhaustion, one that means I can get up and do things with a little extra flair of energy and I'm still okay.

Some days I forget to take my heparin at first, and later in the day I start asking myself, "why am I doing so horribly right now? What did I do to cause this?" I remember heparin, take it, and don't think about it any further because I'm too busy with my day to think about it.

Heparin only stays in the system for 6-7 hours. Currantly I only dose once a day, when I wake up but I've received permission from my doctor to try twice a day if/when I want to. I'm curious to see if it would help with sleep. I'm also really excited about the potential long-term effect of improving muscle tone. Delayed-onset muscle soreness means the muscle is getting stronger, and I figure strong muscles can work with less fatigue than weak muscles. So even though I went into this expecting no long-term improvements, I cannot help but hope for a little bit of that.

Does anyone else have experience with heparin? Anyone have questions I might be able to answer?

 

[illsince1977]

Thanks for writing such a detailed account of your experience. I tried heparin daily 6 or 7 years ago. The first week it decreased my headaches, but after that it did absolutely nothing, unfortunately except massively bruise the injection site. The bruises took over a year to resorb.

I am so glad it is giving you even a modicum of improved quality of life. :Retro smile:

 

[Dainty]

Susan,

So sorry it didn't help you. A year to reabsorb sounds awful! Just curious, did you test for hypercouagulability beforehand?

The worst I've had so far is one injection a big glob of blood came out with the needle and there was immediate swelling the size of a quarter that grew rapidly, to about the size of my palm at one point, and pain lower down from the site that was fiarly intense at one point. It took about 8 hours before the swelling was almost fully reabsorbed into my system, and the (small) bruise showed up the next day as a line rather than a dot. I asked my naturopath about hitting a vein, she said it doesn't happen with these needles, my caretaker asked the pharmacist about hitting a vein and he said impossible, talked with my doctor and he basically said, "Yep, sounds like you ruptured a vein. It's rare but it happens."

Oddly, if I bruise beyond the injection dot the bruise doesn't show up until several days later for me, and thankfully they haven't been too bad yet - injections on my thighs are worse, so I just do my belly now. When I first started the sites were more painful; I would be immobile for half an hour following injection because it hurt to move, and was careful for a couple hours afterwards. A hot shower within the 6 hours or so if an injection resulted in worse bruising and more pain. But after about 3 weeks or so it was like my body somehow adjusted to it; now the only limiting I need to do after injection is ice it for a bit, and then I'm good to go.

Of course, I'm not suggestiong that this could be the case with you....obviously your body did not take well to it at all.

 

[heapsreal]

Hi Dainty, interesting heparin is helping. Do u know how it may be helping, i suppose it has some sort of anti-inflammatory action helping u.

Keep us all posted on how u go.

cheers!!!

 

[aiden424]

I did the heparin shots for about a year and it did nothing for me. I have factor 5 leiden and high fibrin levels.

Kathy

 

[BrightWorld]

Dainty,

Good to hear you are having a positive experience with Heparin. I've been on 30 mg Lovenox (essentially the same thing as Heparin) 1 x day, for 8-9 years. It is in my top five of what has helped the most in my 20+ years of CFS hell. Back in 2000-2001 I did the Hemex testing for hypercoagulation and it showed that I was high in Fibrogen and C Reactive Protein (or something like that). I don't have access to those test results right now to know for sure. Anyway, the thinking was that there is a hypercoag problem in CFS, because chronic immune activation produces inflammation and hence a higher level of Fibrin within blood vessels. Heparin/Lovenox helps with the microcirculation by clearing out the Fibrin.

http://www.hemex.com/pdf/ChronicFatiguehf.pdf

What it's done for me-

Increased overall functionality by about 15%
Eliminated joint and muscle pain (unless I overdo and get into PEM)
Helped greatly with digestion. This has been the big one for me because many, many foods I could not tolerate before became digestible.

A trick I've used to eliminate the bruising is to transfer the Heparin/Lovenox to an ultra-fine, short insulin syringe before injecting. You can purchase them at any pharmacy. The smaller needles eliminate the pain and bruising.

Also, if you didn't know, there is now a generic for Lovenox, which significantly lowers the cost.

In the last year, I've had to change my PCP. I've encountered two docs (so far) that refuse to prescribe Lovenox for this off-label use. I've since been searching for a substitute and the only thing that has worked (in a somewhat similar way) has been Olive Leaf Extract 20%, 3 x day, but OLE can be a vasodilator, which is not a good thing for me.

BW

 

[illsince1977]

The bruising didn't hurt or bother me in any way. It was just unsightly, but it didn't matter at all because it was on my abdomen and that was always covered up.

I did test positive for hypercoaguability beforehand. It was disappointing that treatment brought no symptom relief, but certainly not unusual in my case. I had almost forgotten about it, so I'm glad you reminded me as I'm compiling a list of attempted treatments that didn't help as ammunition for an upcoming doctor visit. I just found out I am XMRV+ by culture and want to try ARVs. If my doctor doesn't agree I want to be able to point to all the treatments he has suggested in the past that didn't help that were based on no more "solid" evidence than the XMRV test. He was not particularly in favor of my trying the one and only thing that actually did help me a great deal in the past (the guaifenesin protocol, believe it or not), so perhaps it will be a good sign (from the universe, if you believe in that sort of thing) if he is resistant. Does that make any sense?

I find it a little odd that no one else replied to this thread. Surely we are not the only two people here who have tried heparin for hypercoagulation. Have you tried nattokinase and lumbrokinase as well? I do very poorly on supplements of any kind and react badly to both. I respond better to pharmaceuticals, so it would not have been inconsistent for heparin to help where neutriceuticals did not.

 

[illsince1977]

I didn't realize that others had posted with their heparin experience when I wrote post #7 above.
Sorry everyone.

I did use a fine guage insulin needle, but still bruised. I was led to believe such a needle was standard for this type of subcutaneous injection, so I never thought to mention it. Maybe I had so much bruising because I bruise easily. Isn't easy bruising fairly common in CFS? Maybe I bruised easily before getting sick, too. I just don't remember. It was so long ago and I didn't feel compelled to notice every little thing about my body then! Who could ever imagine that these things might become so significant one day! I do have very fair skin, perhaps that accounts for it. As I said, though, the injections never hurt a bit, nor did the bruises - they just took forever to go away.

 

[Dainty]

77, that's so strange that the injections didn't hurt you at all! For me the infusion is always painful, sometimes unusually so (i.e. writhing and moaning - yes with the needle inside me). I've found it helps to chill the loaded syringe beforehand, and always use ice afterwards. I can't do icing beforehand.

BW, glad to hear it's helped you!

I'm not sure what needles I have, but they are tiny...perhaps the length of a thumbtack and much, much thinner. I'm a little spoiled in that regard, because we had some other insulin needles on hand and when I took the cap off to compare needle size I burst out laughing, replaced the cap, and told myself there was no way I was sticking that thing into my belly. It was so obviously much longer and thicker.

Currently I have two different kinds of needles, both of which I suspect are "ultrafine". They're the same diameter from what I can tell, but one is slightly longer than the other. Using both it's clear to me that the slight difference in length can make a huge difference in comfort. Unfortunately the shorter needle's plunger sticks if it's been in the refrigerator for too long so for now I continue to use both kinds while fiddling with my arrangement.

For me, even with the shortest, smallest needle injections are still quite painful and I still get (minimal) bruising. Do you experience no burning sensation when infusing the medication? If you're comfortable answering....would you say you have an ample supply of body fat? I ask because I'm wondering if that might be a factor with me...my naturopath was guiding me through the first injection and when I grabbed what passes for my belly fat she was like, "No, really grab a big handful" and I was like, "This is all I got, see? I don't have any more!" :tear: Both that and the hitting the vein thing makes me wonder if my fat deficiency (ha) is factoring into my injection pain.

BW based on your report I'm putting "test foods again" on my (lengthy) list of things to do next with my health. I've been down to eating the same thing every meal for perhaps about a year now - definitely not ideal, but every time I try other things my body just won't cooperate. It would be neat if the heparin helped with that.

heapsreal, I suspect the primary way the heparin is helping is by mechanism of the blood reaching the organs better, but my PCP has said there are multiple ways heparin helps the body. I'm not remembering further details on that right now.

Kathy, so sorry it didn't help you.

I've had a string of hard days so the past week or so I haven't noticed a tangible difference, which is frustrating to me. Still tyring to figure everything out.

 

[BrightWorld]

Dainty,

I had bruising for the first four to five years, then it kind of dissipated. You get used to the needle poke to the point where you don't feel it anymore, unless you stick yourself too slowly. *ouch. Again, after many years of practice. lol.

With the bruising, mostly what I found is that there are certain places around the belly button that are more prone to the Heparin/Lovenox getting caught (bubble/knot like) in a pocket of tissue that takes several days to dissolve. You may be able to tell when this happens after injecting by feeling for it. If so, massage the area until the bubble/knot flattens. You should have minimal bruising after that. I don't have a lot of body fat around my middle, meaning I'm not overweight, so I could always tell if I had a knot. :worried:

I was were you are at with the eating. I could only digest maybe a dozen foods without hours of misery!

Hope this helps.

BW

 

[Dainty]

It isn't the needle poke that hurts, it's the infusion of the medication that burns like crazy. I have to wonder if that could possibly be a difference between heparin and lovenox? I do hope it gets easier. Today's injection was a good one though, so I'm happy.

I've found the knot issue is pretty hit and miss with me; so far I haven't noticed proximity to my belly button making a difference. However I haven't experience it taking days to dissolve! Apart from the time I hit a vein, the knots have always dissipated on their own wihin 5 - 30 minutes. I haven't tried massaging them because everything I read says not to massage the area after an injection, as this can cause bruising. However, I have to wonder if knots are an exception....either way, knots don't always reuslt in bruising, and some bruises appear where there was no knot, so I'm not fully convince that that's the cause. Still, I appreciate your advice based on your experience, and I'll keep experimenting with fine-tuning my technique to hopefully make things a little easier on myself.

Question: do you bother with cleaning the site with an alcohol swab before injecting? I'm just curious because I don't and I find it much easier. According to my naturopath it isn't necessary because the needle is sterile, and actually washing with soap and water would be more effective than the alcohol. I'm not sure if she tells all her patients that or if she just told me that because of my severe MCS because I can't tolerate the alcohol fumes. Either way, for drawing blood and injections I don't wipe it down with anything, and I was wondering if you've been told or found the same thing.

 

[illsince1977]

Is the heparin at room temperature when you inject it? I remember warming up B12 so it would burn less (different needle altogether and IM instead of subcutaneous), but heparin was stored at room temp. Long time ago, so I'm not sure.

 

[Dainty]

Is the heparin at room temperature when you inject it? I remember warming up B12 so it would burn less (different needle altogether and M instead of subcutaneous), but heparin was stored at room temp. Long time ago, so I'm not sure.

I've experimented with both room temperature and with chilled in the refrigerator, but have not tried warming it. So far the chilled solution invariably is much less painful than the room temperature solution, so by that reasoning I was assuming that warming it would be even worse.

 

[illsince1977]

I didn't actually waem it up. I meant I just let it get to room temp before injecting.

 

[Dainty]

Okay, so I figured it's time to update this thread.

My current use of heparin is occasional. It seems that when I haven't had it in a while then when I use it I often get that "night and day" difference where it turns a a bad day or an average day into a good day. As stated earier this can also happen with regular use but it is not predictable. I still have no idea why it sometimes makes an immediate, significant difference and other times there is no change, but there you have it. My current use has been that on a really bad day when I'm desperately trying everything to get a little relief, I try heparin too.

I recently learned from my doctor, a specialist and veteren in the field of allergies and evironmental illness (MCS), that heparin can be used to reverse severe MCS and allergic reactions. I'm really excited to see if that's true, and a bit surprised he didn't think to mention that a little earlier. Even throat swelling, cutting off airways, etc, he says that in 30 years of practice he has never seen it fail. He did say his first choice is to use the epi-pen, unless the person is on beta-blockers (like me) which then makes heparin the first choice. Also, if heparin relaly helps so much with reactions, then I will now be taking it as a prophylaxis before known exposures, and it'll be really interesting to see if it makes a noticeable difference.

Another thing to note: heparin supply. I have very severe MCS (live in a porcelain room, all clothing has to be organic unbleached undyed cotton that has to be boiled and soaked in vinegar and baking soda for months before it can come anywhere near me, I have to wear a Darth Vaderesqe face mask when I leave hte house, just to give you an idea) so the kind of heparin I got was very important to me. The first kind did not have any preservatives and was in plastic vials, then we thought glass vials would be better but that supply had parabens as preservatives. Now we were able to get glass vials that have a really good preservative, I'm forgetting the name, I think it starts with a b and is some kind of alcohol, not sure? Anyway, it seems to be the safest stuff as far as chemicals and leeching goes. I'll try to find the actual name again.

Also, one important thing to note for those concerned about the pain, my latest kind is only half as concentrated as the kinds I was previously doing, which has made a tremendous difference both in pain and in bruising. Instead of 10,000 units per mL, this is now 5,000 units per mL. I still take the same total amount of heparin, but because it's half the concentration I'm injecting twice as much stuff as I was before, an entire syringe full instead of half. I was a little apprehensive, but now so grateful to have this lower concentration, I'd recommend anyone doing heparin try to get the 5,000 units per mL instead of hte 10,000, for me the pain of injection has decreased by about 90%.

If it turns out that heparin helps significantly with my MCS reactions I might start using it more regularly again, especially since the pain is significantly decreased and I notice no side effects. But it is expensive, and I lean towards only using it when I have a good reason to.

 

[ukxmrv]

Dainty, I didn't notice any improvements at all in MCS when on Herparin. Pls let us know how you get on.

 

[Dainty]

Dainty, I didn't notice any improvements at all in MCS when on Herparin. Pls let us know how you get on.

ukx what was the dosage you were taking?

 

[ukxmrv]

Sorry Dainty, it was so long ago I don't think I'll be able to find the packet. They were pre-filled syringes from memory but I cannot remember the dosage. Will post again if I do.

 

[Kathi]

I found heparin shots to be very helpful. As a matter of fact when the Fibro and Fatigue Center caused my heart attack, the plus from the catherization was that it caused my sore throats to abate. This is after a several years. Heparin inhibits NF Kappa B. I take them on occasion and still find relief from them. It is a night and day difference!!

 

[Mikie]

I Started To Reply...

And suddenly everything disappeared. I don't know what happened. I had written quite a bit. I'll check back later to see whether any of it survived. I'm too tired to redo it.

Love, Mikie