Author Topic: Started Cellcept!!!  (Read 5933 times)

irish

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Started Cellcept!!!
« on: January 11, 2014, 12:57:18 PM »
Just a note to let you know that I started Cellcept about 2 weeks ago and so far no issues of any kind. However, I wasn't feeling all too good before I started it and finally called immunology and asked for an antibiotic. I don't know for sure(and neither do they) if I had a bad infection, but I had a sinus headache from heck and lots of other issues. It is known that doxycycline does have an anti-inflammatory effect also and it has been mentioned in the past that I may have a combination infection/inflammation going on.

Anyway, the swelling in my throat, sinuses and lymph tissues in my throat have decreased in size and I feel better. They are optimistic that my t-cell issues won't be a problem because cellcept is easier on the bone marrow than some of the other immune suppressants and hopefully my white cells won't drop down too far. Also, my counts had come up some (but one count is in the toilet, so to speak) and being I have been on the IVIG for 7 years and had less severe infections things may maintain. I think that they are also hoping that the white cells could even come up some as these counts could be from autoimmune disease. It is all a crap shoot. Anyway, I do take prednisone 17 mgm daily(on taper dose), Plaquenil and the IVIG plus the cellcept so time will tell. I am holding the Plaquenil for a few weeks (on my own) as I always get the CNS symptoms from any of these meds and they can pile on and cause a lot of balance and dizziness issues.

Meanwhile my chronically ill hubby is in the hospital again for the 3 rd time since Nov 22 and we have met with palliative care and will be seeing Hospice on Monday. His condition is rapidly deteriorating and I have been talking about hospice to him for a whie but palliative care did a better job of it than I did so he was more agreeable. To say that I am stressed out and addlepated is an understatement. Don't ever think that dying from COPD is easy. If you or your family members smoke help them quit as
COPD is not a pleasant illness. With it comes chronic lung infections that are pretty awful and congestive heart failure and a multitude of other health problems. I know that I have told hubby that he was going to put me 6 feet under from all the care involved with his illness.

He is a dear man and seldom complains and thanks me a lot. He still gets up and about as much as he can and will get his own breakfast much of the time to save me from doing it. He is always telling me to sit down and rest and I sure do that. You should see the house!!! But, he is my hubby and my best friend and I would never dream of not taking care of him. I will get help now with hospice and also some home health care when the time comes. You do what you have to do when this stuff happens. He is prepared to meet his maker and all the plans are made. When this is all over I will sleep and then look out---if I can still walk, I will clean house as therapy. Irish


Linda196

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Re: Started Cellcept!!!
« Reply #1 on: January 11, 2014, 01:09:01 PM »
Dear Irish, I'm sorry you're facing such a difficult time, but it is such a privilege to "know" someone with your strength and grace, and, as always, I find myself grateful for your teaching and example.

As sisters in the nursing field, we have both seen the pain and sorrow of not being prepared, or realistic, even though there is no real way to ever be "ready". You and your dear husband seem to share so much, including your plans for the inevitable, and I hope that gives you both great comfort.

Please know, and let "Mr" Irish know, that you are both held in great affection and esteem by your friends here at Sjogren's World.
Please check out our home page at http://www.sjogrensworld.org/index.html {{INCLUDES A LINK TO AMAZON SHOPPING!!}}
; and live chat at https://kiwiirc.com/client/irc.dal.net/#SjogrensWorld

Carolina

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Re: Started Cellcept!!!
« Reply #2 on: January 11, 2014, 03:29:20 PM »
OMG Irish,

You have the most of everything, I do believe.  Well, everything stressful, and also wisdom and grace and strength.

So now you are doing almost every medication that exists for Immune Mediated condition.

For your husband, you have done everything possible, supported him in every way, and you will continue to guide him through this final part of his earthly life.

It comes to everyone, as you well know.  Your grace, wisdom and strength will see both of you through.

Palliative care is very good, I've heard.  Is it done at the hospital?  That's what it was for my niece who died last year after an incredible struggle with non-remitting Lupus, complete kidney failure, and finally inability to tolerate dialysis. 

Is your son still with you?  My son moved out to his own apartment just before Christmas, and the relief is amazing.  I'm going tomorrow to be with the older boys while my son has an activity with the six year old girl.  That is very manageable.

We rise to those demands placed upon us.....it is our nature.  But a time of rest and recovery is a blessing. 

My thoughts and prayers are with you and your husband, and family.

Hugs, Elaine
Female-Elaine,76-CVID-pSJS-IC-PN-CAD-Osteoarthritis-COPD-SFN-Knee/Shoulder Degeneration-SIBO-Intertrigo-Act.Purpura-Anemia-Copper Def-Raynaud's-Meniere's-Hiatal Hernia-Achalasia-IVIG Gamunex-Medrol-Gabapentin-Atenolol-Pilocarpine-LDN-Nasonex-Lipitor-Estrogel-B-12-Iron-D-Mannose-NAC-Co-Q10-D3-Omega 3

Cricket

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Re: Started Cellcept!!!
« Reply #3 on: January 11, 2014, 08:30:48 PM »
Irish

I am glad you seem to be doing better with your new med.  I am sorry to hear about your husband.  My mom had COPD and it is not easy to watch them go through that.  She also had palliative care and it was great.  They took such good care of her and our family always watching out for us as well.  I know you are a strong person with such grace and dignity, but one can just take so much.  I know you will push yourself to do whatever needs to be done for your husband but please remember to get rest whenever you can.  I will include you and your husband in my daily prayers.
Love
Cricket

P.S.  Please keep us posted how you are doing!!
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mshistory

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Re: Started Cellcept!!!
« Reply #4 on: January 12, 2014, 07:13:38 AM »
I'm so sorry your husband is suffering so much  :( I hope you are able to find help with palliative care or hospice - and that you take care of yourself as best you can.

Hopefully the CellCept will work well for you. It has helped me quite a bit.
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SS-A >8.0, RF positive. Botox for migraines, Clonazepam, Zoloft, Imitrex for migraines, CellCept 1000 mg, Plaquenil 200 mg, Restasis, Zofran for nausea, Gabapentin, Evoxac and Norco for pain.

finallyadx

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Re: Started Cellcept!!!
« Reply #5 on: January 12, 2014, 07:36:39 AM »
So very sorry to hear about your dear hubby but glad to hear that there will be some help for him (and you).  CellCept?  I hope it works wonders for  you - glad to hear you are feeling better already.  Hope it continues.

Sending positive thoughts and prayers your way.
Primary ss dx 2013, plaquenil, vitamin d, iron supplements, vitamin b12, d-mannose for chronic UTI's, magnesium for heart palpatations and Zinc

irish

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Re: Started Cellcept!!!
« Reply #6 on: January 12, 2014, 10:22:50 AM »
Thanks for all your replies. You are always so kind and supportive.

Just to let you know that we were assessed by the physician from palliative care (he was awesome) and he felt we did not need palliative care but were ready for hospice. Sooo, I am home from the hospital now and will clean out the family room where hubby and I mostly live now. We sleep in our recliners, watch our favorite HGTV and A&E shows and other educational stuff plus sleep in our chairs.  It is the "control center" of our home. The biggest problem we have is that we have 2 steps to get up to the main floor to get to the bathroom. Soo, a commode will probably be in the near future. We can also watch people come and go at our son's business (son stops in twice a day usually) and we can watch the fields and the main traffic. Never boring and a big sky overhead.

The other thing to answer is, yes, our son is still living with us with the grandson every other week. The divorce is getting close to the end and it has not been pleasant with his soon to be "ex". Also, son has been to my immunologist and has Hashimotos and the highest peroxidase levels they have ever seen. He has been having AI issues for years and it was such that we could say very little and his wife would hardly let him to to the doctor. I have had him to a new internist, cardiologist and soon to see my neurologist as he was a little high on one of the tests for myasthenia gravis. He had Bells Palsey in May and the immunologist is wondering if it is autoimmune issue related to either MG or the Hashimotos. Lots of issues, fatigue, concentration, the whole ball of wax. I would like to get a hold of my soon to be "EX" DIL and give her a piece of my mind as she really was instrumental in withholding medical care and his concentration wasn't good enough to deal with it. He has managed to work all this time though.

It is tough seeing your kids suffer from something that is really your fault. We never know this in the beginning. My hubby and I both have the AI and we would never have guessed how our lives would be changed. Two other boys and one grandson with issues. We are doing our share to support the docs in the area.

Anyway, just to let you know that I was never a great housekeeper, but I can let stuff pile up in every room and just go sit in my recliner. DRives me crazy but not enough to torture myself trying to get it done. Just goes to show you we can stoop to any level when the need arises. lol TAke care all. Irish
« Last Edit: January 12, 2014, 01:21:10 PM by irish »

Carolina

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Re: Started Cellcept!!!
« Reply #7 on: January 12, 2014, 10:50:35 AM »
Irish, sometimes I think we are Astral Twins in some ways.

My son was married for 16 years to my some day to be ex DIL.  He suffered enormously over the separation even tho' he initiated it by moving out (unannounced even!).  His agony was that he was miserable with her, and miserable without the 'marriage'.  One situation would eventually improve and one would never improve.
Of course he kept hoping for an easier 'third way' = she changes and the marriage can work!

One of his greatest difficulties was coming to terms with how much of himself he gave up to maintain the marriage, and how completely he blinded himself to what he was doing to stay.   "How could I do this for 16 years?  How could I have even married her?   What else has she done that I don't even know about?" (an affair surfaced after he left, shared by friends who all knew, but said nothing to him).

I have tried and tried to stay as distant as possible from really negative comments about her.  I even sent her flowers for her birthday in December.  She IS the mother of three of my grandchildren.  And she, and her family will be in my life in one way or another until my life is done.

I keep telling myself that she was doing the best she could given her upbringing and her experiences which would have destroyed most girls, and instead she persevered to become a doctor!

Your son's conditions are not your fault Irish.  They are the luck of the draw from the genetic pool.  Remember we are part of the endless line of our ancestors, going back to the beginning of time.  We carry many many possiblities, and some of them are activated in our own bodies.

The key of course is that without the set of genetic possiblities that your son has, he would not exist.  Nor would your grandson. 

At this point in time there are no prenatal tests of any of the conditions that we have, that we didn't even KNOW we had until they appeared physically.  And which took long, complex testing to identify when they appeared.

And many of us wouldn't have considered NOT having children, or ending a pregnancy.  And the FIRST POINT is that this is NOT YOUR FAULT.

But I'm sure you know that.  We do wish that those we love didn't have to deal with some of the same issues that we deal with.  But you are finding joy and beauty in your life: the fields, the traffic, the sky.

And you have the wisdom to live with the piles (I'll bet you know what's in each one, which is the key to piles).

And life is growth through pain and suffering.  It seems unfair, but it is true.

Hugs, Elaine

 

 
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irish

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Re: Started Cellcept!!!
« Reply #8 on: January 12, 2014, 01:18:32 PM »
Piles, Caroline, Piles!!!! In the last 6 months mine have become mountains, However, I don't try to climb them as I am in deep hopes that they will fall down on their own and I won't have to agonize over them anymore. lol You are right, non of this is our fault. But, as a mother doesn't it just frost you sometimes that so much stuff gets dumped at your feet. It is because we are problem solvers. With our son, my hope is that I can help him attain better health in order to have a better life cause he has had 21 years of pure he$& . Makes you wonder about chain of events does't it!!!!Thanks,Irish

genko_b

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Re: Started Cellcept!!!
« Reply #9 on: January 12, 2014, 02:27:28 PM »
Good luck with the CellCept Irish. I'm so sorry to hear of your husband's declining health, but that sure is the nature of COPD. That was what my mother had, and it is a very difficult disease, no question.

We will all be thinking of you both. You have held the hands of so many here over the years, and now it is your time.

Take care,

Genko

Dolly Dimples

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Re: Started Cellcept!!!
« Reply #10 on: January 12, 2014, 02:48:01 PM »
Awww Irish, am so sorry for all that you are going through right now.
Sending prayers and healing vibes your way, and hoping your true grit will get you through. Take care,
                            God Bless, Dolly x

quietdynamics

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Re: Started Cellcept!!!
« Reply #11 on: January 12, 2014, 08:07:54 PM »

Hello Irish...and so it goes...the next twist in the road.
Wishing you the best with the new treatment and it will be so much easier for you with Hospice.
Don't forget to tell them of your limitations...really.
I did and was surprised that they had an aide come 'everyday' to help me care for my mother. And the aide helps you the caretaker. That means the aide changes the sheets, washes them, etc. And you can call the volunteers to come right after or before the aide leaves so that you can go to your appts., grocery shopping or just step out for a bit.

It was so much less stressful and gave so much more time to enjoy being together.

And thank you always for your guidance.
Prays to you and your family
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Billydude

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Re: Started Cellcept!!!
« Reply #12 on: January 13, 2014, 09:30:57 AM »
I hope Cellcept is good for you.  I took it for awhile.  Then I got a virus or something and since it knocks out your immune system it took me about six months to get over it.  At that point I went off Cellcept.     That's just my personal experience and I only offer that as something to keep in mind.

harrigan

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Re: Started Cellcept!!!
« Reply #13 on: January 13, 2014, 02:05:15 PM »
Hi Irish - I hope things get a little easier for you both with the CellCept and support from the hospice.  My daughter was on CellCept for 6 years from the age of 11 and it worked really well with only a few difficult infections. I hope it works as well for you.  I know how you feel about your son's health problems but you are doing the best you can for him now.  Your menfolk are very lucky to have you at the helm!

You have been such an encouragement to so many of us and shown us how to deal with whatever life throws at us. Your wisdom and advice and good humour have been an inspiration!  I hope you have many more precious "recliner moments" together.  Sending you much love and courage x Ailsa


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irish

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Re: Started Cellcept!!!
« Reply #14 on: January 13, 2014, 10:58:26 PM »
As usual you folks as so thoughtful and encouraging and I appreciate it.

I have to say that "I lied". I didn't mean to lie---honest!!!

Hubby came home from the hospital tonight and he is not going on Hospice---yet. We talked with palliative care and hospice at length today and he decided to go home and see how long it would be before he has another infection/heart failure/respiratory failure episode. He was cultured with MRSA again although it has been a long time since this type of infection. The nurses at hospice said that of all their patients the COPDers have the hardest time knowing when to sign up for hospice. The idea is to do it sooner than later but not too soon. He definitely qualifies so when he feels it is time he will do it. They changed his inhalers and news and time will tell if that will make a difference. Probably do what we old nurses always said---it isn't what meds you changed them to, it is the fact that you did something. Sometimes just a change will make a difference in someones condition for a few days, weeks, etc.

I always stay all night with him in the hospital. The nurses and doctors have certainly gotten used to us. I do his cares and try to go back home during the morning and do a little work, etc and then go back after supper. This way I can be there as he gets up a lot at night to use the bathroom and he always gets tangled up in all the tubing. I keep him from falling and killing himself!lol This way I am also there early enough that I can see the doc. If I stay at home and try to come in early I usually end up missing the doc. Didn't miss one doc this time. THAnks again folks for your support and allowing me to vent. Irish

P.S. Lest we think we are the only people with problems, the discharge planner came today also and later she told me that she is a caregiver also. Her hubby was diagnosed with Hepatitis A after losing a huge amount of weight and feeling yukky. They got that situation under control only to diagnose him witih leukemia and lymphoma--together no less. Wow--we never know do we!