Low iron no matter what---anyone else?

[Dolly Dimples]

  Aussiemum, have you tried the satchets of liquid iron, forget the name (brainfog again)  ?

       Ask your  chemist about it. It is very pleasant to taste and leaves no bitter taste,

        and best of all it does not constipate..  It acts quicker too being liquid..
                                                     Dolly               

[Chickpea]

Hi everyone!

Sorry it's been a while since I joined in this discussion.  I've had a tough six months with all sorts of new and weird symptoms, and a bit of a crisis with my heart valves.  I enjoyed reading the discussion, especially Carolina's idea that it helps to see everything as part and parcel of SjS.  That makes so much sense to me because otherwise we could be overwhelmed by the flurry of new and odd things to deal with.  I don't know about everyone else but I still have to find a doctor who knows enough about SjS to see things that way.

I had a series of 8 iron infusions in November last year and I've just spent most of May having another series of 8.  If the Venofer is well diluted and given over at least 2 hours then I don't get too many side effects.  The haematologist thought that I shouldn't bother with iron supplements which were upsetting my tummy, but instead rely on regular iron infusions.  Anyone else had this advice?

There's a hurry to get my Hb and ferritin levels up so I'm as healthy as can be prior to heart surgery, scheduled for as soon as I'm well enough.  I just hope it doesn't coincide with the World Cup because I don't want to miss any of the matches!

Take care - Chickpea

[Dolly Dimples]

 Chickpea,  I agree with Caroline, every time I get a new symptom,
                                          I have myself done and finished..  then in my more rational state,

                                         I tell myself not to panic and just wait to see how further the new symptom goes,
                                          Nine out of ten times it goes as mysteriously as it came..

                                             I don't know of anyone personally being treated with blood injections,
                                                     but I have heard of many that have,

                                               I'd be guided by your consultant for now, and try to relax,
                                                            that will do you more good than bad for your coming operation,
                                                                                           
                                                          which I hope will be soon for you, and that you can get back to normal quickly.
                                                         Ps ..your health comes before The Cup  !!!                                                                   
                                                                                                                        Dolly

[genko_b]

Good to hear from you, Chickpea! Hopefully you are feeling a bit stronger now, and will be able to have the corrective surgery soon.

One of my earlier rheumatologists told me that anemia in one of its several forms is often present in all auto-immune diseases, not just Sjogren's. I don't know why that is. Osteopenia/osteoporosis also is often associated with auto-immune disease. There may be some intrinsic reason, but both are certainly complicated by medications, lack of adequate systematic exercise, and other factors resulting from auto-immune conditions.

Genko

[Livvie2]

Dolly,
Do you remember the name of the liquid iron you take? I am using SlowFe, but it is constipating.
I just got some cast iron pans from Walmart. I'm going to cook spaghetti sauce (actually everything) in them (let the sauce simmer for a long time and absorb the iron from the pan.)

My ferritin level is 19 which is normal but low. In 2005 my ferritin level was about 120. I wonder where those 100 points went!
I have been very fatigued.  A doctor friend told me that 100 would be a good level.

When I speak of fatigue--this is how I experience it:  the muscles in my legs feel sluggish and do not have energy to walk; also my brain is not that sharp or sharp for much shorter periods and then needs to rest. 

Livvie2

[c991]

I just came from our Houston SJS meeting.  I may have the answer.  The rheumatologist who was speaking said that SJS can cause us to not secrete enough stomach acid.   If there is not enough stomach acide we can become iron deficient because without sufficient acid iron will not absorb well.

Tuckerdog

Bingo

I take HCI supplements with every meal, it has mellowed out all my GI issues of the past. I was always slightly anemic and had low ferritin levels until I started on HCI on the recommendation of an Osteopath.

HCI=hydrochloric acid

I also use biotene mouthwash with natural enzymes just before I eat, since digestion starts in the mouth (of normal people) and I figure I can use all the help I can get.

I used to have indigestion and took prilosec and zantac. Now the only time I need zantac is when I eat out and don't take HCI. I no longer use prilosec which helps save a little money each month.

PS: low grade systemic candida infections cause anemia also.

[Pegasus47]

Iron needs B12 and intrinsic factor( from your stomach) in order to absorb.  Are you taking B12?  Vitamins for women during pregnancy has both, and really works to elevate iron level.

I take 2000 mg Vit. D daily.  When I feel a cold coming on, I take 50,000 mg to knock it out.  Great stuff!

Hope this is helpful!

Pegasus

[Waldop]

Babs,

Many years ago my iron was completely depleted!! Even my "back up" ferritin levels were non existent!! I had to be put on iron pills and that was a true misery!!  The abdominal pain was unbelievable!!  Nevertheless, today my iron levels seem to be better. This was diagnosed way before I was dx with Sjogren's.

Barrie