Author Topic: Started Cellcept!!!  (Read 5932 times)

quietdynamics

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Re: Started Cellcept!!!
« Reply #15 on: January 14, 2014, 02:35:05 AM »

My dear Irish, I sincerely hope that in the midst of all the emotional turmoil, you are not thinking you have to explain changes here of all places.

Events will play out in their own way. Drs nor Nurses do not have total 100% insight.

Not sure how it works in all states? Here Hospice was not 100% cut in stone.  At any time my mother or family could stop and have her sent to hospital for treatment...then if not successful, start Hospice again.  No crystal ball.

Great for both of you that your husband is home ...you can both get some sleep at home?
Nothing like face-to-face with the Drs. during rounds, but it is wearing.
Feels good to be home..grounded.




Sjogrens ANA 1:640; SS-A/B+; Fibro; IBS; Neuro symptoms,Thyroid Anti-bodies; Ocular Rosacea, Livedo reticularis,

"You can't have a positive life with a  negative mind"

Carolina

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Re: Started Cellcept!!!
« Reply #16 on: January 14, 2014, 05:38:35 AM »
Ah, Irish, so true:  We Never Know.

That is the 'duality' of life. 

1.  We really don't know or control what will happen next.

2.   We must live on a daily basis with patience, persistence and acceptance, make plans, and act as if we, in some measure, do know and do control what will happen next.

It is a balancing act, one that you clearly handle with grace and strength. 

I do believe that our 'conditions' make the duality of life difficult to deny.  We must face both our lack of knowledge and control, and learn to live with a measure of patience persistence and acceptance.

I have found this is the path to wisdom and joy.  It sure ain't easy.

I think of you so many times a day, as I check this forum.  You mean so much to so many, Irish.  I can only imagine the power of your presence in 'real life'.

Hugs, Elaine

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4Kids

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Re: Started Cellcept!!!
« Reply #17 on: January 14, 2014, 06:14:40 AM »
Irish I am so sorry to hear of all the troubles you and your hubby are facing. I wish you well, I wish I could help come and clean up for you, because my legs still work and I could do that.  But it's too far.

I guess in the end I wish peace for you and no more than you can handle but it sounds like it is almost too much already.

Much love and hugs,

Jackie
Plaquinel, Restasis, Salagen, Arthrotec, Cod Liver Oil, B Vitamins, Palafer-C, Plaquinel, Metformin, Spironlactone, Biotin

Ark mom

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Re: Started Cellcept!!!
« Reply #18 on: January 14, 2014, 06:41:38 AM »
Irish, my heart goes out you and your hubbie!!  Hugs!

I started cellcept a few months ago, 500mg daily to 1000mg daily and now 1500mg daily.  I am increasingly feeling better!  Even my severe light sensitivity has calmed down quite a bit in the past week.  Hopefully this will be the drug that saves us from ourselves! 

Best wises to you both.  :) 
41 yo with Sjogren's (sero-neg), FMS & sub-clinical Graves; Plaquenil, Evoxac, prednisone, Restasis, Cellcept, gabapentin, duloxetine

Velcro

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Re: Started Cellcept!!!
« Reply #19 on: January 14, 2014, 06:48:46 AM »
I'm glad the Cellcept seems to be helping you Irish.  As always, I'm amazed at your strength and grace with everything you face daily.  I'm sending huge thoughts and prayers up for both of you.

Carebear

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Re: Started Cellcept!!!
« Reply #20 on: January 14, 2014, 07:58:30 AM »
Dear Irish,

You continue to inspire me.  Prayers for you, Mr. Irish, and rest of your family.
Sjogren's syndrome, RA,  Raynaud's phenomenon, Celiac Disease, Hashimoto's Thyroiditis, Grave's Disease, Fibromyalgia, Osteoarthritis, Osteopenia, Cervical Stenosis

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irish

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Re: Started Cellcept!!!
« Reply #21 on: January 17, 2014, 10:30:29 PM »
Just an update! It was December 30 that I started the Cellcept and so far so good. Can't say that I am having any side effects. I am on Doxycycline and have felt darned sick the past couple of months off and on. Hard to tell what it is but antibiotic did help. Have infusion MOnday and see ENT on Tuesday to see if my lingual tonsils have infection. I can tell that the swelling has gone down in them.

Also, my hubby was in the hospital again from Jan 9 through 13 and he cultured out MRSA, but I think it was just an old colonization that showed up.We talked with Palliative care and the head doc said hubby was eligible for Hospice. He said yes and then no and after we got home he had a rough couple of days and I encouraged him to give it a try as his condition is deteriorating and his wife (ME) is getting worn to a frazzle.

Sooo, today they came out and signed him up and the new oxygen supplier came and I pick up meds tomorrow. I am of the impression that the way he will be cared for with hospice may help to stabilize him to a certain extent. Sometimes I think that running to all these doctors just wears a chronically ill person out. Honestly, there are so darned many sick people in doctors offices!!! He has had the best docs with this illness and his (and my) new internist primary is just great and then some. We so appreciate her.

There is a lot more going on at our house, but that can wait for another time!!! Irish

susanep

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Re: Started Cellcept!!!
« Reply #22 on: January 18, 2014, 01:04:09 AM »
Oh dear irish, I was reading all of this with what you and your husband are going through now. I am so sorry for these difficult times you both are facing. Life isn't fair, it just is.

I have both of you in my prayers. I will keep both of you in my prayers. God can give a true complete comfort for you both.

I am glad that the cellcept is helping you. I hope and pray it continues too. You deserve as much help that is out there for you, and I pray you in your loving care for your dear husband are able to get some rest.

I have the extreme unrelenting fatigue so I know how hard that can be in dealing with things that we have no control over.

Irish, you have blessed people in ways you may never even know in this life. I know your dear husband has been so thankful I'm sure for all he sees you struggling to do.

Because he sees how sick you are too, it must be hard for him to not be able to do what he would like to for you. Most of us usually feel that way.

Bless you both dear.

God Bless, and hugs to you.
susanep
Sjogren's, Lupus, Rheumatoid Arthritis, Hypothyroid, Fibro, Sleep Apnea, Diabetes 2, Asthma, and Gerd.  (Meds I take) Omeprazole, Pilocarpine, Levothyroxine, Effexor, Cpap, Aspirin, Mobic, Prilosec,, Xanax, Restasis, Systane,Vitamin D3, Plaquenil, Gabapentin, Provigil , Advair, Nasonex, and Proventi

angeldancer

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Re: Started Cellcept!!!
« Reply #23 on: January 18, 2014, 05:48:51 AM »
Bless your heart Irish.

Your love and devotion to your husband is so honorable. Love is so powerful and it gives us the extra strength needed to battle conditions that we did not ask for.  I am praying for you.  I am sending love your way.  I am sending encouragement to you.  You have sent me encouraging words of hope in the midst of my storm. 

As for your son:  he is a wonderful part of your life.  No one wishes anything on their child and having lost a child I would give up everything to have him back with me.  Your son's biggest blessing has been you and your husband.  Your love care and devotion speaks volumes.

My life has been a very difficult journey.  My daughter has a few symptoms that concern me and so far every test comes up negative.  I told her that she still has to watch out because of the symptoms that I see for an AI.  I don't want her to walk around life blindly.  My 18 year old has been sick all his life.  He has been on SSI since 1 years old.  I pray that his journey in life becomes easier.  I will love him through all his disappointments and woes.

Just know that this part of your family will keep you uplifted and keep warm thoughts and prayers going your way.

Lady Angeldancer
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quietdynamics

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Re: Started Cellcept!!!
« Reply #24 on: January 18, 2014, 09:46:03 AM »
Hope you get some relief from the frazzles.
It was so much easier having the nurse come to the home, meds were ordered and delivered to the home, nurse even knew which local pharmacies were 24 hrs. Just great resources. I was not familiar with the area..being in Moms' home.

Did you request the aide? You really need to conserve energy. Even though she changed the bedding, I still was there pitching in... the 'mothering part of us'.
There is a difference between taking a moment for ourselves knowing someone is with "dears", and try to take a moment, yet still being on hyper-alert...no rest there... or time to zone out and breathe.

And my mother enjoyed the change in conversation.... not the same old stuff from me.. lol. She liked hearing about the aides son, etc. And the aide gave her body massage, etc. Aide would end the visit talking to me, giving emotional support, We still are in contact.  ;)  And I hope to see her soon in the spring. 
Sjogrens ANA 1:640; SS-A/B+; Fibro; IBS; Neuro symptoms,Thyroid Anti-bodies; Ocular Rosacea, Livedo reticularis,

"You can't have a positive life with a  negative mind"

irish

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Re: Started Cellcept!!!
« Reply #25 on: January 18, 2014, 01:23:54 PM »
Thank you again for the prayers and support. Also, I do think that hubby is going to really enjoy having someone else around besides me. Trust me, even the best of marriages can get "tense" with the advent of chronic health problems. Sometimes we are both people we never knew existed before and we have to take a "time out" like the kids do. Chronic illness is hard on a marriage---expecially in our twilight years when we are more forgetful, etc. Life is never dull that is for sure. THanks again. Irish

engy

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Re: Started Cellcept!!!
« Reply #26 on: January 18, 2014, 05:52:37 PM »
Many thoughts & prayers to you & your family. I wish I could help more. When I get upset I clean so I wish I was closer to come clean your house for you!

We are all here for you in spirit... Carie
DX:Sjogrens w/mild Lupus overlap,Hashi,Celiac,Raynauds,Sm.Fiber Neuropathy,POTS,Fibro.,CFS,OI & other dysautonomia.
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ohiolady

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Re: Started Cellcept!!!
« Reply #27 on: January 18, 2014, 07:13:07 PM »
Irish,  As you go through this difficult time, my thoughts and prayers are with you and your husband.  You are an inspiration to all of us here at Sjogrens World. 

Anna
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nannysbaby

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Re: Started Cellcept!!!
« Reply #28 on: January 19, 2014, 09:21:39 AM »
Many thoughts and prayers your way.
Primary Sjogren's, Fibromyalgia, RLS; Methotrexate, Hydroxychloroquine, Vitamin Supp., Thera Tears

Cricket

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Re: Started Cellcept!!!
« Reply #29 on: January 19, 2014, 09:59:34 AM »
Prayers are headed your way!
Cricket~
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