Has anyone tried Venofer IV's to increase iron/ferritin?

[Gingergrrl]

I did a Google site search on this and didn't find anything so was curious if anyone on PR has ever tried "Venofer" IV's to increase iron and ferritin. I need to research it further but it looks like it is being tested as a treatment for POTS in addition to ME/CFS. And just in general it could be a way to increase iron and ferritin which are always low for me but just "slightly" low and none of my doctors have ever been worried about it.

But for me "slightly low" might be affecting my shortness of breath and I wonder if this could be of any help? I suspect I would never tolerate iron pills although with the IV form, it is always possible that I could be allergic if it contains a preservative. I have just started to research this and have not brought it up with my doctors and no idea what they would say.

I am including a link to Cort's blog in which he talks about a patient who recovered after trying Venofer IV's (but of course everyone is different and I know this patient may be totally different than myself). Am posting the link and am curious if anyone has any thoughts on it. Thanks in advance!

http://www.healthrising.org/blog/2016/08/23/iron-man-young-persons-pots-mecfs-recovery-story-pt/

 

[Invisible Woman]

I don't know if they use the same stuff here in the UK - if not then this reply may not be relevant.

I have discussed having iron by IV with a number of doctors (including one haematologist) over the years as I am always either borderline or actually anaemic, have very low ferritin stores and I have yet to find an iron supplement that I can tolerate. The docs have always decided against allowing me to have iron by IV.

Basically, it would seem that if you have a history of asthma or are a very allergic person then there is a high risk that you will react badly to the IV. This can be fatal, even though these infusions are carried out in hospital with all the necessary equipment standing by.

I have not personally been diagnosed with MCAS, but I am relatively mildly allergic to a lot of things and the opinion my doctors came to was that it's not worth the risk. Even if I was prepared to give it a go they wouldn't be prepared to do it.

 

[Mij]

What is your ferritin level? None of my doctors in the past were concerned about my levels being low unless it got into single digits. When my levels got below twenty I was feeling light headed, below 15 is when I started feeling out of breath, . and below 10 I had difficulty walking. It was not a good feeling on top of having M.E.

My integrative doctor once mentioned an iron injection, he gave this to his elderly patients.

 

[Gingergrrl]

I don't know if they use the same stuff here in the UK - if not then this reply may not be relevant.

Thank you and what you wrote was extremely helpful!

I have discussed having iron by IV with a number of doctors (including one haematologist) over the years as I am always either borderline or actually anaemic, have very low ferritin stores and I have yet to find an iron supplement that I can tolerate. The docs have always decided against allowing me to have iron by IV.

I've never discussed this idea with any of my doctors but intend to now. I always test borderline low on iron and ferritin and have never tolerated iron in a pill form (even when I was healthy and tried it in a multi-vitamin).

Basically, it would seem that if you have a history of asthma or are a very allergic person then there is a high risk that you will react badly to the IV. This can be fatal, even though these infusions are carried out in hospital with all the necessary equipment standing by.

I do not have asthma but I have 100% confirmed MCAS and am a very allergic person. I had no idea that this put me at high risk with an iron IV or that it could be fatal! Thank you for sharing this with me and I was curious, do you know if it is the iron itself or if it is one of the additives? Venofer (I think) is a relatively new product and is a combo of iron and sucrose (and I am not allergic to sucrose) but I am not sure what else is in it.

I have not personally been diagnosed with MCAS, but I am relatively mildly allergic to a lot of things and the opinion my doctors came to was that it's not worth the risk. Even if I was prepared to give it a go they wouldn't be prepared to do it.

I have been doing IVIG (Gamunex) and about to have 3rd one and I expected to be allergic to it and prepared myself for full blown anaphylaxis and ironically am not allergic to it at all. So I figured if I am not allergic to IVIG, then I should be okay with Venofer/Iron but now I am not sure. I am going to ask my MCAS doctor about this and luckily see him in about a week.

What is your ferritin level? None of my doctors in the past were concerned about my levels being low unless it got into single digits. When my levels got below twenty I was feeling light headed, below 15 is when I started feeling out of breath, . and below 10 I had difficulty walking. It was not a good feeling on top of having M.E.

I do not know my current ferritin level and have not had it tested in a while. My most recent iron level (in May 2016) was 34 and the range was 40-190. This seemed concerning to me but my doctor was not worried.

My integrative doctor once mentioned an iron injection, he gave this to his elderly patients.

No one has ever mentioned it to me. My red blood cell counts are always on the low end or borderline as well. I am going to be doing some tests for my Endo soon (as I am tapering off of Cortef plus thyroid tests) and am going to ask him to check both my iron and ferritin levels which I know he will have no problem checking.

 

[Invisible Woman]

What is your ferritin level? None of my doctors in the past were concerned about my levels being low unless it got into single digits. When my levels got below twenty I was feeling light headed, below 15 is when I started feeling out of breath, . and below 10 I had difficulty walking. It was not a good feeling on top of having M.E.

My integrative doctor once mentioned an iron injection, he gave this to his elderly patients.

My serum ferritin levels dropped to under 4. (the range in the UK starts "normal at 15+ to 300). Mine rarely goes above 12. My consultant wanted to see what I would be like if we could get this figure into the hundreds. Despite there being no problems with B12 or folate and a healthy diet we couldn't get or keep this figure above 15.

Interestingly there is a Swiss study examining the effects of low ferritin on non-anaemic, fatigued women and found that even in the absence of anaemia, iron supplementation by IV had a beneficial effect. Here is a link to an article in Runner's World (I know! .... it discusses no athletes though and has a couple of good links embedded):

http://www.runnersworld.com/sweat-science/ferritin-and-fatigue

 

[Invisible Woman]

I do not know my current ferritin level and have not had it tested in a while. My most recent iron level (in May 2016) was 34 and the range was 40-190. This seemed concerning to me but my doctor was not worried.

I think a lot of docs will assume that this may be down to menstruation and that your body will quickly make up the difference from your ferritin stores (unless they are low, of course).

 

[Invisible Woman]

I do not have asthma but I have 100% confirmed MCAS and am a very allergic person. I had no idea that this put me at high risk with an iron IV or that it could be fatal! Thank you for sharing this with me and I was curious, do you know if it is the iron itself or if it is one of the additives? Venofer (I think) is a relatively new product and is a combo of iron and sucrose (and I am not allergic to sucrose) but I am not sure what else is in it.

I'm not sure. I know that a new product came out on the market in the last couple of years that is suitable for use in some patients with asthma, but whether it uses a different iron molecule (sulphate vs fumarate, gluconate or something different) or different additives or both, I don't know.

The consultant discussed this new product with me in the same appointment that he decided he couldn't justify the risks. He also told me that there had been a fairly recent fatality at a nearby hospital due to an adverse reaction to the IV.

One possibility could be to administer steroids prophylactically. Again there is risk - the steroids may not prevent the reaction, have side effects themselves etc. Just not worth the risk, I was told.

 

[Mij]

@Invisible Woman Good article. How did you feel when your ferritin was at 4? I've read from several members here that they have difficulty increasing their ferritin with iron supplements. What iron supplements did you try? I took this iron supplement created by Kent MacLeod, he was the biochemist who did my consultation for my OAT, RBC Fatty Acid, Antioxidant, Iron tests, my integrative doctor told that he was a pioneer of iron. The BEST iron pills ever.

My sister has Hashimoto and low ferritin as well, says it's the best, she buys 8 bottles when she comes to visit.

It took 8 months of iron supplements twice a day to get my levels back up to 50, but then over the year it dropped back down to single digits.. After that I started requesting my lab reports because I realized that doctors in general go by reference range and that my B12 was also borderline deficient but they kept telling me it was fine for years.

Fast forward to present day, I'm post menopausal now and my ferritin stays at 100 without needing supplements. My WBC is up at 4.8 and my TSH is at 1.9, which is great since it was up at around 3 for the last 16 years. So it seems that having higher ferritin levels has improved other factors. I've also increased my b12 which must have helped. I feel the same though, haha, but at least I dont' have to worry about taking iron anymore.

 

[Invisible Woman]

Hmmm.. ferrotrate. That's a new one on me.

Right, I've checked - it's ferrous sulphate. Been there, no good for me. Basically, ferrotrate is combining both the iron supplement and vitamin C in the same capsule. Vitamin C greatly enhances the absorption of iron, but the vitamin C and iron must come into contact with each other in the stomach. You could also just take some vitamin C at the same time as an iron supplement for a similar effect.

Most of the iron we take in by way of food or supplements passes through the system - it is hard to absorb. Combining with vitamin C has the advantage of improved absorption and this then means that you can reduce the iron dose which in turn reduces the risk and severity of side effects. Unless you are really sensitive of course.

Making sure B12 and folate levels are good is also essential for iron absorption, although the pernicious anaemia charity in the UK were claiming that the "normal" range of B12 was too wide and this was causing some problems.

http://pernicious-anaemia-society.org/

Basically I have tried pretty much every iron supplement going in the UK, including pediatric formulations and liquid supplements. Even with tiny amounts, after a few doses, I'm in a bad way. And once I set that off then I become ultra sensitive to everything!

Someone, I think @justy (?), mentioned a supplement she gets in Belgium. It sounded interesting and I am just waiting for someone I know to visit the continent so I can see if i can try some.

 

[Invisible Woman]

@Mij, you asked how I felt with below 4 levels of ferritin. Absolutely terrible: really bad headaches, my brain fog was much worse. I was a total zombie and falling asleep at the drop of a hat throughout the day. At the time I was also anaemic - my haemoglobin was at about 90 - normal range is 130-180 (I think).

On the plus side - I slept much better than usual at night but it did me no good .

 

[Apple]

My ferritin levels were around 5 a few months ago. I managed a month or so of 'easy to digest' supplements before stopping as my bowel was cramping so much. I haven't had my follow up blood test as I haven't had time/energy/didn't wanted to get told off by gp for not complying, but I feel like absolute HELL lately so I doubt my levels have risen much. I was going to ask my GP about referring me for iron injections or iv, but have also read that lots of people can get anaphylaxis from it.

But i've read so many stories of people having so much more energy once their levels get up to 50+. I really believe that everyone, especially those of us with ME/CFS/fatigue should have levels 50+ It's just so difficult to get there. Arrrghhh.

Waffle waffle. Sorry.

@Invisible Woman how did you manage to get your levels to rise a bit? If you did.

Based on what I've read though @Gingergrrl I'm not sure I would risk it in your position at all. But only a doctor can really answer that one for you. Best of luck whatever you decide.

 

[Gingergrrl]

I found a journal review article that I just read and am going to post the link and some quotes from it later today in this thread. It is from the European Medical Assoc re: iron IV's and anaphylaxis reactions and is very thorough and easy to understand.

After reading it, I absolutely will not be asking to try the infusions and it is not advised for patients with a known mast cell disease and many other issues and there have been deaths from it even when infused in hospital at very slow rate. The EMA says it is too dangerous to ever be allowed to infuse at home (which I'm sure US insurance companies ignore to save money).

Will post the link and some quotes later but the article completely changed my mind. Thanks to @Invisible Woman and @Apple for prompting me to look for it. The blog I read made it seem like a great idea but it was too good to be true! Am going to stick with IVIG and not add other things into the mix right now but am still going to test my iron and ferritin levels for next Endo appt in a few weeks.

 

[Gingergrrl]

http://www.haematologica.org/content/99/11/1671

Here is the link and some quotes and was having trouble posting it from my phone earlier. The article is called: "Hypersensitivity reactions to intravenous iron: guidance for risk minimization and management" and here are some interesting quotes from it:

We undertook literature searches in PUBMED and EMBASE using the search terms “intravenous”, “anaphylaxis”, “anaphylactic”, “anaphylactoid”, “iron” as major subject headings or occurring in the title/abstract.

We, therefore, assembled a panel of experienced clinicians from fields of medicine in which IDA is common (gastroenterology, hematology, immunology, internal medicine, nephrology, obstetrics and gynecology), as well as experts in the pharmacology of drug reactions and IV iron.

Mechanisms by which iron infusions induce adverse reactions may vary with the iron preparation used and with the pre-existing morbidity of the recipient. They cannot be distinguished by their clinical presentation. The two main possibilities are immunological IgE-mediated responses, for example, to the dextran component of IV iron preparations containing this molecule, and complement activation-related pseudo-allergy (CARPA).

The final common pathway of these processes is likely to include activation of mast cells and basophils, either directly, or via anaphylatoxins (C3a and C5a) that increase in blood as a consequence of complement activation. The secretion products of these cells, which include histamine, thromboxanes, leukotrienes and platelet-activating factor,11 trigger smooth muscle contraction, increased capillary permeability and loss of fluid from the intravascular space. Subsequent bronchospasm, laryngeal edema, tachycardia, hypo- or hypertension, hypoxia and reduced tissue perfusion can culminate, in severe HSRs, in loss of consciousness, circulatory collapse (shock), and cardiac and respiratory arrest.

Some of the factors, such as a previous adverse reaction to IV iron or other drugs, a fast iron infusion rate (see above), a history of severe atopy and systemic mastocytosis, appear to increase both the incidence and severity of HSRs.

It is a long article with a lot more detailed explanation but I wanted to give the highlights to anyone considering this treatment. I do not have systemic mastocytosis (vs. MCAS) but my doctor told me that even though the cause is different, the treatment and recommendations are identical and urged me to put "mastocytosis" on my medic alert bracelet vs. "MCAS" so more paramedics/doctors would know what it was. In any case, the allergy and ANA risk are the same with both diagnoses so I will not be trying the iron infusions!

Hope this helps others who are considering (and if I did not have MCAS, I would still be considering it myself but for now, it feels too risky).

 

[Gingergrrl]

Basically I have tried pretty much every iron supplement going in the UK, including pediatric formulations and liquid supplements. Even with tiny amounts, after a few doses, I'm in a bad way. And once I set that off then I become ultra sensitive to everything!

When you said in a few doses you were in a bad way and then ultra sensitive to everything, did you mean allergically sensitive/more at risk for anaphylaxis or something else?

@Invisible Woman how did you manage to get your levels to rise a bit? If you did.

I am curious, too, if you don't mind sharing!

 

[Invisible Woman]

@Invisible Woman how did you manage to get your levels to rise a bit? If you did.

My usual levels were -serum ferritin = approx 10-12 and haemoglobin =approx. 115-130ish. I would have occasional dips and I would try taking tiny doses of a liquid paediatric solution twice a week for a bit (with vitamin C) and avoiding tea and coffee (even decaff) for at least an hour either side of the dose. After 2 - 3 weeks I would be doubled over in pain , kept awake at night etc etc and have to stop. Eventually it would come up again to the levels described above.

My diet is good (excellent according to the haematologist): red meat twice a week, green leafy stuff every day, eggs etc. No tea or coffee within an hour of meals. Take vitamin C with meals. I also eat about 40-50g dark chocolate a day - apparently this is really good to help raise iron (handy 'cause I was gonna eat it anyway).

The dramatic dip occurred due to hormonal problems. I have had a couple of D&Cs (progesterone causes me no end of grief so I end up in surgery). After the D&C's I tend to get a couple of months period free and this helps. It takes months and months but eventually my haemoglobin and ferritin levels finally creep up to their usual inadequate levels.

I don't know what my levels were pre-ME but I have always had a tendency towards anaemia despite having the light periods often associated with hashimotos. I'd love to get those levels right up just to see what it feels like!

 

[Invisible Woman]

When you said in a few doses you were in a bad way and then ultra sensitive to everything, did you mean allergically sensitive/more at risk for anaphylaxis or something else?

I meant allergically more sensitive. Although I have had problems with my tongue and soft palate, face and skin swelling, I have never actually had anaphylaxis, though I did carry around epipens when it was really bad.

My gut is hypersensitive and I have a family history of Crohne's disease (among other autoimmune problems). Once the gut flares up it reacts to everything and it can take ages to get it to settle down again - this is typically where I start to acquire sensitivity to things I had been fine with before.

 

[Gingergrrl]

I meant allergically more sensitive. Although I have had problems with my tongue and soft palate, face and skin swelling, I have never actually had anaphylaxis, though I did carry around epipens when it was really bad.

Thanks and that is very helpful to know that just the pills (not the infusions) can increase allergic symptoms which is the last thing I need right now! I have not had stage 4 anaphylaxis or used the EpiPen (but have one in my purse and at home at all times) b/c last summer was getting between stage 2-3 anaphylaxis to all food but water and ended up in hospital.

I just had a three week full remission, then one minor episode where I ended up taking Atarax, and now appear to be back in the remission b/c I was able to eat a normal breakfast with no pre-meds and no symptoms. It's all a slim fine line that I feel could disappear at any moment but am hoping my next IVIG in two days improves the remission even further.

So that is why I am so hesitant to even try an iron pill right now and just trying to get through this Cortef taper. I get excited about new ideas to try but also need to be cautious. I will test my iron/ferritin levels in about two weeks for my Endo appt but even if it is low, I don't think I will do anything about it right now.

 

[Invisible Woman]

I will test my iron/ferritin levels in about two weeks for my Endo appt but even if it is low, I don't think I will do anything about it right now.

If these are low, it might be worth checking:
1) B12 levels and if these are low also then checking for
2) gastric parietal cell antibodies (the immune system attacks some of the cells that line the stomach and this then inhibits B12). This is a simple blood test.
3) folate levels
4) coeliac disease - this one is tricky as you can get a lot of false negatives. According to the gastro guy I saw an endoscopy and possible biopsy are the gold standard in diagnosis.

At least then you will have ruled out things that might inhibit your ability to absorb iron without doing anything too drastic. All bar the gastroscopy simply involve blood tests.

 

[Gingergrrl]

Thank you @Invisible Woman and if my iron and ferritin are low in two weeks when I test, I will ask for those additional tests.

ETA: Interesting, I heard back from my main doctor today and he thought the iron IV (if I do test low again and if I cannot tolerate pill form) might actually be okay for someone with MCAS. I am going to ask my MCAS doc at appt next week to see what he thinks. It is still very unlikely that I will try this but it was good to know that he thought it might be an option.

 

[Weaver31]

Hi everyone, if anyone is still reading this post, I am headed in for an iron infusion today. I'm a little worried about it and plan to have them do seriously do one drip to test before pouring it in. This past Fall I had reactions to most things that were IV, including B12, and other Bs and even just plain fluids. I would break out in rashes on my chest and heart rate would skyrocket. Did anyone ever end up trying the IV iron?