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Sjogrens Topics => Living With Sjogren's => Topic started by: Cassi307 on June 12, 2019, 04:46:51 PM

Title: Hospitalization.
Post by: Cassi307 on June 12, 2019, 04:46:51 PM
 I saw my rheumatologist and nephrologist today and lose this clinic. I go there even though I don’t have lupus but my Sjogren’s has affected my surviving kidney..
 I have not been able to control my inflammation levels and took me off of my higher dose of prednisone because of my glaucoma and early macular degeneration. I have been on Orencia which was stopped because of chronic respiratory infections and also on leflunomide.  I have changed my diet to a vegetarian diet and exclude any kind of vegetables that could cause inflammation. None of this seems to have mattered because my inflammation levels continue to kill what’s left of my kidney function.  I just came off a trial of CellCept which made me very ill with abdominal pain and abdominal cramping and diarrhea. We stopped it a few days and I started back on a lower dose but it left me with terrible abdominal pain. I am now scheduled for endoscopy because of this.
 Now he says nothing seems to have worked and we’ve run out of options and he’s talking about hospitalizing me. Has anyone been hospitalized just to control their inflammation levels? How did they treat you in hospital any differently than as an outpatient? How long do you have to stay?  I have a diabetic senior cat with no one willing to take on his care so a hospital stay is not an option.
 I specifically need to know about the hospitalization issue. Has anyone had this experience?
Title: Re: Hospitalization.
Post by: irish on June 12, 2019, 05:46:48 PM
I'm sorry you are having so many issues and know it is really upsetting for you. As far as he hospitalization goes I would advise you to ask your doctor what his plan of action is. Every one of us with these issues would probably have a different scenario when it would come to medication and any other treatments ordered. I would imagine you would have treatment only specific for you.

As far as your cat goes you might try calling a vet clinic and ask them for advice on what you should do for your cat. I would try to line up some type of care for your cat cause that way you can get your needed care. You might check with social services in your county also call a church or two to see if they have someone who would take a cat into their home.

These issues are difficult for your but I would wonder if you could get help from others and maybe take your cat to visit other possible caregivers in their home prior to placing her,

I also wonder if a vet clinic would be willing to give free care while you are in the hospital. Also, these clinics may know someone who takes in cats when their are difficult health issues. Don't give up and don't put yourself last on the list. You doc may want a kidney specialist to see you and do testing. It sounds like you need this done now to get your treatment specialized for you. Please know wthat I am thinking of you. PLease let us know how things are going for you. Irish
Title: Re: Hospitalization.
Post by: Cassi307 on June 12, 2019, 06:28:25 PM
 Thank you for your thoughts. I already spoke to my vet and they are unable to take my cat because they do not have anyone staying there overnight when he needs his insulin. I checked with local groups that board animals and there is no one who can take him as long as he needs injectable medicine.  I belong to a church and  no one wants to be responsible for cats with a chronic illness
 I see my kidney doctor at the same time I see my nephrologist I have been treated for kidney disease for 11 years. I attend the lupus/sjogrens clinic  every few months. There is no further testing that can be done except to control my inflammation levels. They cannot do a biopsy because I only have one kidney and my kidney function is too low.  I have early amd, borderline glaucoma and early cataracts and can no longer do large doses of prednisone. Some of the medications available for treating the inflammation are contraindicated because of how low my kidney function is.
 They are hoping that if I can get my stomach issues under control we might be able to retry the CellCept or something similar.  I am already scheduled for an endoscopy and under the care of a Gastroenterologist as well
Title: Re: Hospitalization.
Post by: irish on June 12, 2019, 09:42:02 PM
It sounds like you are doing the right things medically and can only hope that something will help you feel better. Have they mentioned doing dialysis?? I am not familiar with the possibility of doing any anti-inflammatory treatment when a person is on dialysis.

Also, have they ever tried IVIG on you for the inflammation. I do not know what the rules are regarding kidney function and IVIG. I sure hope that you can get some help with these issues. Good luck. Irish
Title: Re: Hospitalization.
Post by: Carolina on June 14, 2019, 08:28:22 AM
Dear Cassi,

My heart goes out to you!  And to your cat.  I hope you find care for him.

I'm also devastated to learn that your Immune Disorder has cause your Immune System has attacked your kidneys.  I know Lupus does, but I'm not really surprised, I guess, that Sjogren's has attacked your kidney.

So far my Immune Disorder, with Chronic Inflammatory Disease, has not attacked vital organs.  I hope that because I started on this horrible journey very late in life, 60, I may not live long enough to have progression to kidneys.

Here is an article about Chronic Inflammatory Disease.

Here is more than you ever wanted to know.   The interesting stuff is about half way down.

Regards, Elaine
Title: Re: Hospitalization.
Post by: Cassi307 on June 17, 2019, 02:54:48 PM
 Sorry I did not see or respond to this sooner. Thank you for the links to the articles.
 I am scheduled for two doses of Rituxan in July. The higher dose of prednisone has improved things slightly  and the omeprazole  has helped my stomach and I have been able to eat. Problem is the fatigue is so bad I’m still not getting enough fluids in.
 I see my eye doctor this week and I’m going to ask him if I can see a retina specialist so I can get cleared to be able to take other medications.
 These last few months have been almost as bad as when I was first diagnosed six years ago. I’m hoping my doctors efforts with medication will work and keep me out of the hospital. This whole period of time his left me anxious all the time.
 Thanks to you and Irish for responding and for your input.  I don’t have anyone else to talk to with this group.
Title: Re: Hospitalization.
Post by: irish on June 18, 2019, 03:30:54 PM
Glad that you have had some meds that have helped you. Keeping your fluid intake up can be hard. Having issues with stomach also bother with fluids sometimes. I have learned that when my reflux is bad it helps to drink water in small amounts and quite often as it helps to dilute the acid in the stomach. This sort of helps cut down on the stomach pain.

Popsicicles are a good war to get fluid and calories in. Also jello is helpful also. It can be hard getting nourishment in also and we need nourishment in order to have energy and help keep our body able to make and repair cells and tissues. In a pinch a float with pop and ice cream can help with calories and fluids. Often when we are ill we think it is our body telling us we are sick that makes us feel so lousy. Then if we eat something out blood sugar raises some and we feel so much better. Low blood sugar can cause headaches just like dehydration can.

Sometimes a cup of hot tea will give us a good boost too. Remember low salt bullion and lower sodium soups. The snack packs of pudding and tapioca also can help us out with small snacks. Some times there is nothing that sounds good but we must eat. I like very dark toast with just small amount of jelly on it. This is good when my appetite is really off and nausea is present. I love the salt free soda crackers also and they are good with milk and a little sugar. Just some suggestions in case food is hard to figure out at times. Keep us updated. Hang in there cause things will be slowly improving I would think. Make sure to let the docs know just how lousy you are feeling and ask for help when needed. Hugs Irish