Tag Archives: medicine

Life with Skyrizi

1 Reply

Hello everyone!  I hope this post sees you well and everyone had safe and happy holidays!  Honestly I haven’t posted anything since this past summer, since I have begin Skyrizi.  Reason being, nothing much has happened, except life of course.  I have had a few ups and downs and in betweens since last talking to ya’ll, so here we go!

When I was having all the problems this past summer, I was in between the medicines Rinvoq/Stelara and Skyrizi.  There was probably a month and a half between the meds that I was really in a tailspin!  Finally, I was approved by my insurance for my next medicine, Skyrizi.  I had to do 3 start-up infusions, then every 8 weeks with a pre-filled pen I could do at home.  Everything performed without a hitch and I got my energy back and life has been great.  I began to clean out/organize things around the house, enjoy going out with friends/family and doing everything to the fullest!  In the back of my mind though, I know through experience that all this can be stripped away quickly at any minute and I have been cautious and more aware of the things I eat/drink, especially here lately.  I am wanting to plan a vacation this year so I need to ensure I am living a healthier life so I am not sick during the vacation.  It has been so hard to plan anything long-term because I don’t know what I’m going to feel like that far out, so say a little prayer for me please!

I hoped that by taking Skyrizi, it would heal my fistula as well.  So far, I still have my fistula and I did, for a time, have ongoing (one after another) urinary track infections until my Infectious Doctor had me take Cefdinir (antibiotic).  I had taken this in the past and it worked miracles for me!  I went from draining my bag 12-14 times a day to around 4-5 times a day.  I have been on it since I have been taking the Skyrizi, so I’m hoping when I get off the antibiotics that it wasn’t the Cefdinir that made me feel better but the Skyrizi.  We’ll soon find out.

When my home health nurse drew my blood back in October, I had the best blood count I have had in a very long time!  My hemaglobin (blood) count was normal when it had been low for a long time, my magnesium levels were normal finally and my liver enzymes were in the normal range as well.  I was so amazed at all these counts being normal because I haven’t seen it that good in so long!

Around the beginning of October, my home health nurse told me that I would be getting a letter in the mail telling me that my pharmacy/home health provider will be closing at the beginning of this year.  That means that I would be losing my nurse/friend that I have had since 2020 and I couldn’t believe what I was hearing.  She had been through a lot of things with me, including the death of my dog and my many hospital visits.  I also valued the information she would give me about what’s going on in the medical world and about my health.  She too was worried about her job and what she would be doing with the changes going on.  We both were bummed but thought we would have until the end of the year as her being my nurse.  She came every Monday to my house to change my dressing so the first Monday in November she came, changed my dressing and left.  The next day I received a call from the pharmacy telling me they found me another pharmacy and a new home health facility and they will take over starting next Monday!  I called my current nurse to tell her what was going on and to tell her my goodbyes and I never seen her again.  That was hard.

So I have another pharmacy and I had another home health nurse for about 3 weeks until my insurance told them that they wouldn’t pay for the nurse to come to my home, I should be going somewhere to get my dressing changed.  All of this has just snowballed me and it is so much different from what I was used to for 4 years.  I know sometimes change is good but I still don’t like it.  I now go to a local hospital’s infusion center to get my dressing changed and that’s something right there…The first time I had my dressing changed there, the nurse was very high-strung and got stressed with something else going on and took it out on changing my dressing.  The second time it was changed, another nurse pulled my PICC line out a bit to arrange it in a different way.  OUCH!!  I decided that I was going to ask my GI doctor at my next appointment if I can get my PICC line out.  I’m so done with it.

Oh yeah, by the way, the all too familiar pain that was previously in my right side, is trying to come back.  Every now and then the pain comes back and will last for about 2-3 days and go away…all I can do is to take it day by day-and pray.

Chow for now,

Kelly

 

 

 

Update 2024

3 Replies

Hello everyone!

I hope this post finds you in good health and spirits!  The only excuse I have that I haven’t written in a while is because, yes, I am out of remission and doing okay, just not terrific.  I would like to let you in on an overview of what has been happening to me during this time.

Going back to the last update that I posted, I had felt an all too familiar sign that my fistula may be coming back.  It did.  The Entyvio had stopped working for me around August 2023.  My doctor had taken me off the medicine and replaced it with 15mg Rinvoq, still along with my 90mg Stelara I was already taken also.  During that time, my Crohn’s Disease spiriled out of control because I had to wait at least a good month for the insurance to approve it.  Imagine that.  When I finally got the approval, the Rinvoq took a few months for me to notice a slight change for the better.  When my Crohn’s wasn’t doing as well, I was in a lot of pain on my right side of my abdomen and I was extremely gassy.  With this 15mg Rinvoq, the pain was relieved, however, I had still remained really gassy.  This has gone on every since then.

In February, my GI doctor told me during an office visit that she was leaving to go to another hospital affiliation.  I was devestated.  She had been my GI doctor for years and now I would have to find another and start over, so I thought.  So, back in 2017ish, I left my GI doctor from one hospital to change to another because of personal reasons.  I had asked my primary doctor to refer me to another great one and she did.  I really liked this doctor, however, it came to note that she was out of my network with my insurance so I had to be referred to another GI doctor, the one that left me recently.  Now, many years later, this doctor that was out of my network decided to leave her practice where she was at and join forces with the doctor I most recently had.  Long story short, when my doctor told me she was leaving me recently, she suggested I take on the doctor I had many years ago that is now in her practice.  I did.

I had my first appointment with her a few months back and she remembered me!  She suggested that I take the 45mg Rinvoq so that we can get this fistula to close back up.  I loved the idea because this fistula has really been giving me a lot of problems.  When I left her office, I felt confident that this thing would heal after receiving the 45mg. Rinvoq because I knew the 15mg Rinvoq helped me some.  It took the insurance a while again to approve the 45mg medicine, so the doctor told me I could come every two weeks to her office and pick up some office samples of the 45mg Rinvoq they had.

During this time, I am noticing that the Rinvoq samples are not digesting properly because I can see it coming through my colostomy bag as I am draining it.  This concerns me because I also don’t feel any better with the 45mg Rinvoq than I did with the 15mg Rinvoq and I fact, I believe I am getting worse!  My symptoms/notices are – 1) the Rinvoq isn’t working the way it should because this is a time-released drug and by the time it gets where it should be on a normal person, it leaves my short gut before absorbing. 2)  I have been having severe pain on the right side of my  abdomen.  3) multiple UTI’s because I am seeing mucus/feces while urinating in the toilet and a lot of gas that also passes through my fistula now and 4) I am also feeling a lot of pressure underneath that I have to relieve with warm sitz baths.  With these symptoms, I called my doctor to let her know what was going on.  She suggested I keep on the Rinvoq for now because studies have shown that even though the medicine may not absorb completely, the patient still gets some benefits from taking the drug.  I’m not sure if I agree with this totally or not.  Also, she suggested doing a steroid taper of Prednisone to combat the flare that I am having.  I agreed and believed she was on her way to ordering the taper.  Believe it or not, it took me several phone calls, several emails and a week just to get her or anyone in her office to respond to me.  I wasn’t a happy camper because I was in severe pain.

I’m going to leave off here because I have a whole other story to tell ya’ll about my annual trip to The Mayo Clinic.  Oh boy!!  I have a Zoom appointment on May 9th with my doctor from Mayo so I want to give ya’ll the full report on that when I have all the information.  I do want to let ya’ll know that we have had some serious sicknesses and deaths in our family, including our dog Jasey, since I last posted and don’t by no means want anyone to think I am wanting to take presidence over what has happened.  I love ya’ll deeply, you know who you are.

Chow for now,

Kelly