Low iron no matter what---anyone else?

[Chickpea]

How did your iron infusion go on Friday, Julie?  Did they give you the Benadryl and Solumedrol before the iron infusion?  How long did the infusion take?  How did you feel afterwards?  I hope it wasn't too bad and that you managed to rest over the weekend.

I went to see the haematologist last week and I've also got to start iron infusions:  twice weekly for four weeks, starting on Tuesday.  My Hb is very low but apparently the main concern is my iron stores that are completely depleted and need building up urgently.  Like Irish, I've been told to take iron every day for the rest of my life which doesn't fill my heart with joy - the thought of that plus the effects of morphine will leave my poor bowels in quite a state!  The haematologist is testing me for Croen's Disease which can prevent you absorbing iron and apparently can develop alongside/after other AIs, particularly SjS. 

I had a few months of severe anaemia 8 years ago, had lots of tests and investigations but nothing untoward was discovered and I slowly recovered.  Never worked out what caused it.  This time I'm pretty sure it's linked to gastroparesis, and the fact that I barely ate for 3 months this summer.  I need to get the anaemia sorted out before I can start Cytoxan so I'm keen to get it right asap. 

Tucker - lots of us have to take meds to reduce stomach acid particularly if we're taking NSAIDs.  Did the rheumy connect that with stomach problems and anaemia?  Are we making the problem worse? 

Thanks everyone for raising this issue.

Take care - Chickpea

[Julie]

Chickpea,

I made it through the infusion Friday.  It took 6 hours.  I was given Tylenol, Benadryl, and Solumedrol.  I was leary of the Benadryl because those of us with Sjogrens are not to take any decongestants or antihistamines due to their drying effect.  I've been hospitalized before with lung hemorrhaging due the severe dryness, so I was pretty concerned.  When they injected the Benadryl, it was a head rush, dizzy feeling.  Kind of like when you are being put under with general anesthesia and know you are going out.  The nurse said that was 'normal' and to just go with it??  They were surprised at how loopy and tired it made me for the whole day (and into the next), but I was not surprised.  Medications always hit me hard and last for a long time. I usually try to get doctors to understand that I only need child size dosages of things, but not many of them listen. (I weigh under 100 pounds)

After being given the premeds, I was given a small test dose of iron to make sure I was not going to react adversely to it. It was probably a 45 minute wait after that before they hooked up the continuous bag of iron.

They did have to restart the IV half way through, because it started hurting and I was getting some orange staining under my skin from the needle not being in the vein quite right. 

Other than being tired while the infusion was being done, I didn't have any allergic reaction.  I kicked back in the lazy boy, covered with several blankets, and dozed most of the day.  Glad my husband came with. No way was I alert to drive the hour home. 

They told me to expect to have flu-like symptoms for 2-3 days following the infusion.  The doctor said that I should not schedule any energetic activities for a couple of weeks, because it would take 2-3 weeks for this iron to really kick in and start rebuilding blood cells.  Of course, wouldn't you know it.. the day before the infusion, my period started!! Great!     

Since the infusion, I've had terrible rock hard stomach bloating, upper indigestion, and lower IBS pain.  I am trying to read and figure out which of the meds did this to me. I have gallstones, IBS and diverticulosis...so... any one of the premeds could have caused inflammation I suppose.  I'm hoping it will be very temporary and that my Protonix will get it under control quickly.

When they first told me I'd have to have this infusion, I was hoping that it would be a one time need, but the more I read about it, it may be very difficult for me to keep my iron stores up without them, because my GI tract can not tolerate oral iron.  Doc told me to start eating chicken and beef liver. 

I've had anemia for years. They have always attributed it to Sjogrens and fibroids, but I've never had my iron stores be almost non existent like this.  It's a very unsettling feeling knowing my hemoglobin is at transfusion level lows,  and I still have to wait a couple of weeks for the red cell production to start making me feel better.   Heart palpitations seem to be a 'little' less erratic since the infusion though, so that gives me hope. 

Chickpea, please let us know how your infusion goes.  You will be in my thoughts and I wish you the best.  It is a comfort to be able to share our stories with each other.  Thank you!

-Julie 

[Julie]

Chickpea, How are your infusions going?  You must be having a different kind than what I had if you are having them twice a week.  I had a really rough couple of weeks after the 6 hr infusion I had.  I was so weak, I had to call my husband home from an out of town job. Just now starting to get a little energy back.  My stomach was a real mess.  I expect that was from the premeds they gave me, but I shudder to think I may have to have this again some time.  I don't go back for a Hgb/iron recheck for a couple of weeks yet.  My iron level was 2 and my Hgb was at 6..and wouldn't you know, the day prior to the infusion, I started that lovely menstrual cycle, so I lost even more before my body had a chance to replenish any red blood cells.

The doc had said there are also iron injections that can be given via IM in the rear, but he said they are painful and expensive.  I don't care how painful the shot it.  If anyone has had those and had good luck with no side effects, I would love to hear from them as well so I can tell the hematologist that I might want to consider that form of iron if there is a need again. 

He did say there was another infusion iron too, but that they put you in the hospital and give it over some 3 days and have to monitor you the whole time.

When I go for my recheck, I need to find out the name of the iron that they gave me so I have it for future reference.

Hope all is going well for you Chickpea!

Julie

[Patze]

Hi Tuckerdog,

Maybe that's the answer why a lot of us have low Vitamin D too.  Very interesting, and thanks for the information.


Patze

[Chickpea]

Hi Julie

Thanks for getting in touch!  I've just got home from the 6th of 8 iron infusions I'm having every Tuesday and Friday for four weeks. 

I think it must be a different method to the one you had.  The first infusion they did a test to see whether I had a reaction to it, just as you mentioned. After 30 minutes they decided it was fine and increased the speed of the pump.  Getting the cannula in wasn't a lot of fun because my veins kept collapsing and it was extremely painful.  Third time lucky and I didn't even bruise much.  In the middle of the night after the first infusion I woke with severe pain across my chest, sort of under the bra level.  It lasted about 20 minutes and slowly faded.  I mentioned it at the next infusion but they didn't have an explanation.

The second time I had a bad reaction - arm went very cold and my vein was painful - so they slowed the rate of the infusion and since then they've put in a diluted dose at half speed.  I have a variety of bruises on my hands and arms, real battle scars!  I've been exhausted after each infusion and just need to come home and sleep.  I haven't noticed any other changes; apparently it will be 120 days before the iron infusion will register as a change in my Hb or iron stores, both of which were running empty. 

I wonder why this method isn't available at your hospital?  FYI it's called Venofer - maybe you could ask about it?  It's definitely preferable to painful iron injections in your behind!  Or to the infusions you had.

Hope you're feeling better soon.  Do keep in touch.

Take care - Chickpea

[Hkay66]

I know I am posting to an old post, but I am considering iron infussions for my low iron
and because I have IC, iron pills badly irritate my bladder.  My iron, ferritin was at a 5,
but I was able to get it up to a 12 with supplements until my bladder starting
protesting.  One of my drs is recommending it and one isn't.
Just wondering if you ladies (or anyone else with this experience)
think these infussions helped and were worth the side
effects.
If you happen to see this post I would love to know how you are doing!
Thanks!

[Chickpea]

Hi Holly

Sorry for the delay in replying to your post about iron infusions.  I had a series of 8 over 4 weeks in November, and I've just started another series.  My Hb is higher than it's been in a while - 10.9 - but my ferritin levels are low.  I'm due to have heart surgery soon so the surgeon wanted my blood to be as good as it could be!

I cope fine with the infusions, as long as they're slow.  I have 200ml over 2 hours.  Any faster and my arms goes cold.  I did have a bad headache after the first one of this cycle last week, but I was fine after yesterday's.  They certainly do help.  I react so badly to iron supplements that I'm considering having regular iron infusions instead of taking the tablets.

Hope you're feeling better soon.

Take care - Chickpea

[Carolina]

Me too!   I was severely anemic, couldn't climb stairs, almost passing out when I stood up.

I had colonoscopy and gastroendoscopy, NADA.   

Turns out anemia is a FREQUENT condition that goes along with Sjogren's.   I took iron and brought my iron up, then was told to stop it, and down my iron went again.

Now I just take it twice a day and don't care what the doctors say.

One of the few pleasures I've experienced is having what is called a "unifying diagnosis", so that my anemia and chronic UTI's became part and parcel of Sjogren's instead of just being random horrible things happening to me.

Maybe that's weird to say, but even knowing that my PN is probably related to my pSjS, comforts me.   I'd rather have one thing with lots of symptoms than a whole lot of unrelated things.  I even think my coronary artery disease is probably caused by inflammation of my arteries, related to Sjogren's.  Makes sense to me.

Carolina

[Joy Cox]

AMEN, CARLOLINA... LIKE YOUR IDEA OF ONE THING WITH SYMPTONS!!! 

[Hkay66]

Thank you chickpea and everyone else for your replies!!  I am glad to
hear for the most part, chickpea, that your iron infusions went well.
I just saw the hematologist about 1.5 weeks ago to set up iron infusions
at the recommendation of my neurologist. (I see too many "ologists"!!)
The good and bad news is that my ferritin went all the way up to 16 with
the little bit of iron I could tolerate taking, but the bad news is that now
that I am in "normal range" (10-291 is considered normal) he thinks
insurance won't cover the infusions.  He suggested taking no iron for
6 weeks and then expects my iron to drop below the 10 mark again...
with my luck it will drop to 11.  The neurologists want me to get to
at least a 50 as she thinks many of my neuropathy type symptoms
and vibrating muscles are due to the low iron.... I wish I knew for sure!
I am thinking about calling the hemotologist to send a preappoval to
my insurance for the infusion and see what happens.

[stephL]

Blood work for Celiac has a high rate of false negatives so is not reliable, which many doctors still do not know. Did you have an endoscopy? My GI doc says that a common mistake is that the biopsy is not taken from far enough into the small intestine to be accurate. And was the biopsy evaluated by someone with special training in diagnosis of Celiac Disease? With Celiac, there are subtle changes in the small intestine (other than obvious villi damage) that an untrained pathologist could miss. You might consider having another biopsy (endoscopy, not colonoscopy!) and have it sent to a Celiac Center or other lab that specializes in diagnosis of Celiac for evaluation. If that is not a possibility, then you could try going on the gluten free diet to see if your nutritional deficiencies are resolved. Unexplained Vitamin D and iron deficiencies are typical with Celiac Disease. The gluten free diet is challenging to learn and you would have to do a good bit of research to educate yourself. Good luck!

[Patze]

Hi StephL,

Let me welcome you to the SJS World and family! 

Can you tell us a bit more about you so the wonderful members here can get to know you a bit better?

Take care of yourself -

Patze

[Pattibou]

You sound like me with the same conditions. I have been anemic for the last three times i have had blood drawn. This last time was when I went in because my foot is numb. They called and said I am anemic again and she wants to do more blood work to find out why. I have taken iron supplements for years and it doesn't seem to help. I'm glad they are finely going to search for a reason.

[Pisces24]

Don't know if this is a possibility BUT do any of the meds you are taking have a possible side effect of either reducing iron or appetite suppressant? Hopefully your doctor would know so you don't have to dive into the medical journals.

I ask cause my iron got very low once and my dr have a fit. Come to find out a side effect of the medicine was appetite suppressant. I'm 105 lbs soaking wet and don't get hungry much -- so that was not something I needed.  After he took me off that a month laster my iron was back to normal.

BTW: I hate with a passion the iron tables as they give me an upset stomach!

[aussie mum]

BTW: I hate with a passion the iron tables as they give me an upset stomach!
[/quote]

I often wonder if the sensitivity to iron tablets is caused by the iron medication or the artificially coloured outer coating of the tablet itself.

Many people have sensitivity to artificial colours and preservatives.