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Hi guys, well after seeing my 12 y.o. sons paed rheumy, Liam is now taking 40mg pred reducing over 2 months to 0, and if successful then he will switch to MTX, I really did not want that for him.  Unfortunately his little body is so confused with all thats going on, he has been having more frequent epileptic fits, so a sleep deprived EEG is next.  His paed rD wants Liam to see a gastroenterologist due to his constant nausea and hunger.  BUT, his local paed does not agree that he should be on these pills, she believes that his strep throat still showing high titres is causing the joint and temperature problems and wants him to see an ENT, so I await with baited breath the outcome.

As for me, I had my assessment done for RITUXAN and easily reached the ESR and CRP numbers required and also the 20 swollen tender joints, they counted at least 33 on the day. I have to wait until Weds for transfusion, any ideas for energy until then, this extreme fatigue is killing me.  Regards Janie.Have you tried a product called spatone..i get mine from the health shop. its an iron supplement that you add to fruit juice or water...It made a huge difference to me

Janie, I probably don't have to tell you this, but please do not over do yourself, it will greatly exacerbate (sp) the fatigue, but I do want to offer you my support. I pray for a quick and easy procedure on Wednesday.

 

Best Wishes,

LISA

 
 
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inflamedOnline2008-11-28 08:43:51Prayers and good wishes from here.I'm so sorry you have so much going on!  Take care!!WHEW! You sure have your hands full. Hope your infusion or was it transfusion? renews your energy! How worrisome to have Liam on those meds when you are still suspecting strep...it so hard when you just don't know what's causing what! Hoping you and he are feeling better very soon! janie - I am praying for you and your son to get some relief soon. Jane,
 
I'm so sorry you are going through so much.  You'll be in my prayers.
As usual, my online friends are making me feel much better, I am so grateful to have all of you on my side, hugs janie.xx   Pin cushion, I will ask my GP about taking spatone, thankyou.  Yes Lisa, I know about overdoing it, even when my iron isn't low, i really pay for it when I overdo it, so boooorrrrring!!!!!!  I get so fed up of being at home resting, today I have a really bad tummy and I don't know if it's from the endoscopy procedure, my usual MTX tummy or a bug that my son had!  Another day for laying low, story of my life.....

Janie, I hope you feel better very soon. I'm so sorry you are going thru so much.  I had an endoscopy, too, on Wed. Mine made me feel a bit icky too. But nothing like yours. I think they must have some after-effects. Seems like they should tell us what to expect, though. I hate these surprises.

I'm sorry to hear that you must have transfusions periodically, Sweetie! You just seem to have so much to deal with. I hope they help raise your iron and get your energy back. I know how helpless it feels to have no energy. I've been on iron pills for months at a time, for anemia, but never a transfusion. Your numbers must have been terrible.

Feel better soon!
Much love, Nini
Yes Nini, my numbers were iron - 7 and ferritin stores 18 Dr said they couldn't go much lower and that my bone marrow had practically no stores.  It happened once before and I had a transfusion and it really helped so I am sure I will be feeling a lot better by Weds.  Did you get your endoscopy results?  Hugs Janie. [QUOTE=inflamedOnline]Janie, I probably don't have to tell you this, but please do not over do yourself, it will greatly exacerbate (sp) the fatigue, but I do want to offer you my support. I pray for a quick and easy procedure on Wednesday. Best Wishes, LISA
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.............i never over do myself because im so lazy...........i make my hubby do everything for me...........probably why we have such a sh*tty marriage.  This place rocks!!!!!!!! 
Janie, I'm sure you'll feel better after the transfusion.  You have your hands full with Liam and I know that the worry is terrible but you'll be able to better deal with all of it after Wednesday.  Take care.  LindyJanie, My husband said the doc told him they didn't see any problems. The removed a couple of small polyps from my small intestine, but everything else was fine. They take a few random biopsies, but nothing expected to be wrong. I didn't even know that an endoscopy went as far down as the small intestine! I guess they've seen my entire digestive system by now. Had a colonoscopy in Jan. Aren't we lucky girls?! :)
 
I just wish I knew what caused the heartburn that feel like a heart attack. And a  bit of back up into my throat at times. I do have Sjogren's, and take a lot of meds, so it probably has something to do with that.
 
Please let me know if you hear anything new. You should be feeling a lot better after the transfusion.
My thoughts and prayers are with you and your family.
Hugs, Nini
Hopfully things will get better. It is hard not to get discuraged when so much is going on all at once. You are in my prayers.
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