Re: Ferritin loss AND Seasonal Allergies

March 28, 2010

I am not willing to give up and not get some experienced, knowledgeable advice

from my previous post (I've heard nothing from you)

Here are the questions which I am waiting to hear from you about:

1) Do you recommend any certain prep for either the endoscopy or colonoscopy

that doesn't bring about a flare or major disturbances? The thought of ending up

in the hospital due to complications from the preparations they've suggested for

me, is not pleasant

2) Do you have any experience with ferratin levels AND reactions to the infusion

such as mine? What have you done to maintain adequate levels?

3) If the over the counter drugs for seasonal allergies are out of the question

for us SCDers, what do you use? Do you have something compounded? Is there a

list that I should share with the local compounding pharmacy of typical

additives that are added to meds, that we can't have?

Thanking you advance for your wisdom.

Lynelle

SCD 8 years

>

> I've been thinking about the fact that with my health, when it rains it

pours. It never seems to be simple. Everything comes crashing down at the same

time. I'm asking for help on what to do and how to prepare for whatever course

of action I choose. I have spent some time looking through these message boards

trying to piece things together but I know there is a wealth of knowledge and

experience out there and am wondering if you wonderful people can help me piece

this together and come up with some advice based on experience.

>

> Two main issues right now

>

> 1. Low Ferritin Issues

> 2. Seasonal Allergies

>

> First, you might be wanting to know that I started SCD 2001. It has been

life changing and life saving with just a few hiccups in the road. Through the

years I have tried various medications and supplements most of which I have more

adverse side effects than benefits. I therefore choose to be very strict with

SCD and it beautifully works for me most of the time. This tends to become an

issue when I have a medical issue or need to have a medical procedure.

>

> Ferritin

>

> Back in 2008 my blood test showed that I needed to do something about my low

ferritin levels. I began taking Floravital to raise iron levels and then

realized it was illegal through this group. I also tried lots of iron rich

foods, cooking in cast iron pans etc. etc. In total, I still couldn't get the

level to come up. I had very low Ferritin levels (around 8) I thought that as

a result of chronic pain for radial and ulnar nerves in my right arm, I had low

energy from that, proved otherwise. Had my first IV infusion at that point. It

was a single dose (can't recall name) and I had a reaction, not life

threatening, pretty uncomfortable but managed it with additional medication and

lots of discomfort. Ferritin levels held at the blood checks up until 8 weeks

and we thought everything was fine though I was still living with chronic pain.

The Crohn's itself was in check so I went on with normal life. Didn't think

that I was to have periodic blood draws, but evidently I should've.

>

> February 2010 at my yearly blood draw after assuming and feeling all was

well, I was surprised to discover my Ferritin levels were even lower (in the 4

rang)e. Hematologist was concerned and recommended alternative iron infusion.

I agreed to have infusion in two dose of Venofar and had a mild reaction to the

first dose (joint pain, back pain, nothing else a little benadryl would not

resolve in several hours). Second infusion 3 days later I had a more

significant reaction that started while I was still receiving the drip. They

gave me a steroid and additional dose of benadryl IV. By the time I got home I

could not walk up the stairs (severe joint pain in ankle). Neither reaction was

said to be allergic and neither long lasting but nothing I want to experience

again if I can avoid it.

>

> The issue we are trying to discover is why am I losing the Ferritin after

the infusion. With the history of my Crohn's and the changes in my menstrual

cycles, two specific areas are suspect as causes for blood loss. I first saw my

the GI who recommends both endoscopy and colonscopy coming up mid-April. I

would love to know best options for the legal SCD prep of either or both of

those. Does anyone know of a regiment that will not land me in the hospital?

Although both GI and I agree my Crohn's is in check, he is suspicious of a leak

somewhere in my system that is going undetected so far.

>

> Next I saw the OB/GYN because of the amount of blood loss each month due

to the length and heaviness of my cycle. He is certain that I am bleeding too

much each month. His recommendation is either a progesterone filled IUD or a

uterus only hysterectomy in order to maintain my iron levels. I am in my early

40's and my family is complete so those are not issues at this stage of my life.

My concerns are not wanting to put something foreign (progesterone) into my body

to interact with all the other issues currently going on. I just don't seen to

be able to put anything (drug or supplement) into my body without adverse

reaction. Concerns for a hysterectomy would be the prep and recovery of a

surgery. Any experience or wisdom in this area? Has anyone had one of these

procedures done to try to stop the bleeding and increase your ferritin levels?

>

> Seasonal Allergies

>

> In addition to all this I am currently struggling with what I believe to

be seasonal allergies. I had them last year, I went to the doctor and

eventually diagnosed with a sinus infection. Does anyone have some

recommendations for how to assist allergies. I am already using a netti pot

regularly. I read here something about a compounding pharmacy being able to

make a claratin mix. Can someone please share some information and tell me more

about a compounding pharmacy and what do I ask for? Is a prescription needed?

Do your doctors recommend one that you should use?

>

> Thanks in advance to the wisdom and experience you can shed on these health

issues for me at present. I am a frequent reader of the group, and seldom take

the time to ask. I appreciate all that is shared here.

>

> --

> Blessings,

>

> Lynelle

>

March 29, 2010

1) I found the Dulcolax followed by Miralax prep to be doable. Probably the

easiest prep I've had.

2) I've had several rounds of iron infusions (1 a week for 4 weeks). I always

react to the first one (after I get home) with chills and vomiting. The

following 3 always go fine. I'm dreading seeing my hematologist in a month,

because I know it's time for another series. It will be my first one on SCD

though, so maybe my body will handle it better. I take a birth control nearly

year round (skipping the bulk of the inactive pills) to help my anemia as well.

However, I just found out that the reason I may have trouble keeping my ferritin

up might be hypothyroidism. Once I get that worked out, I'm hopeful that the

infusions will be a thing of the past.

3) I eat raw local honey, which helps a lot. I also take Zyrtec, which has

illegals in it. All my meds have illegals, but there's not much I can do about

that (I can't afford compounding). I never cheat on the diet, so the small

amount of illegals in the meds haven't seemed to hamper me any.

Holly

Crohn's

SCD 12/01/08

> >

> > I've been thinking about the fact that with my health, when it rains it

pours. It never seems to be simple. Everything comes crashing down at the same

time. I'm asking for help on what to do and how to prepare for whatever course

of action I choose. I have spent some time looking through these message boards

trying to piece things together but I know there is a wealth of knowledge and

experience out there and am wondering if you wonderful people can help me piece

this together and come up with some advice based on experience.

> >

> > Two main issues right now

> >

> > 1. Low Ferritin Issues

> > 2. Seasonal Allergies

> >

> > First, you might be wanting to know that I started SCD 2001. It has been

life changing and life saving with just a few hiccups in the road. Through the

years I have tried various medications and supplements most of which I have more

adverse side effects than benefits. I therefore choose to be very strict with

SCD and it beautifully works for me most of the time. This tends to become an

issue when I have a medical issue or need to have a medical procedure.

> >

> > Ferritin

> >

> > Back in 2008 my blood test showed that I needed to do something about my low