Hi again. Since the last update, I have been back to Mayo for a followup with the Dermatologist for the pyroderma. All looks good on that front and I have been dropped from 150 mg cyclosporine down to 100 mg a day.
I finally dropped down to 10mg of prednisone, but within days, I started to hurt in my lower stomach and had no appetite. It has been over a week now and getting worse and bleeding when I have to go. I went back up to 20mg of pred and haven't seen much improvement. Lab work show everything looking good so we are waiting on the results of the stool sample. The dr wants to rule out food poisoning or any other bacterial agent before making a decision.
I am not due for my next Stelara treatment till March 20, so I am not sure what is going to be done. If this is a minor crohn's flare we will probably just go up on pred a little till the next treatment. The last thing I want to consider is surgery again. Dr Cangemi said we would give Stelara at least 6 months to work - this would be June.
I know that with the other biologic meds I have been on (Remicade and Humira) they have to be given in more frequent doses for crohn's than for arthritis. Stelara hasn't even completed the clinical trials for crohn's yet and could be another year before they are complete. The dose for psoriasis and arthritis is week 0, week 4, and week 16, then every 12 weeks thereafter. With crohn's and the other meds the dose is twice as often. I am wondering if the Stelara dose needs to be every 6 weeks instead to maintain remission.
Right now, I am just trying to wait it out till Monday to see what the rest of the lab results say. I am just praying that I don't have to go to the ER or be admitted to the hospital. I don't want to be put back on the fentanyl patch. Other pain meds I really don't have a problem with when coming off. The fentanyl though I have severe withdrawls.
I ask whoever is still reading this to keep praying for me as I fight this battle.
As to our finances, we are still struggling though through the gift of a friend I have been able to pay off all my dr bills and settled with all but 1 credit card. This is a relief to my mother who has been trying to cover everything. She still has her credit card bills and our day to day living expenses. We are trying to get assistance with my health insurance premiums which would pay anywhere from half to all of my monthly premiums. Having this would be a miracle. It would free up between $250 and $500 a month that can pay for hearing aids and then go to repair our roof and other things in the house.
Our bath is still not completely done. Dad just put the shower door in a couple weeks ago and the tile has not been grouted yet. The cabinets are still sitting in the floor - at least we have a place to put the towels, rags, and soap. Hopefully we can finish this soon. It has been a process since Oct just to get the things installed - and the damage was done in May! Has almost been a year.
I asked my dad to finish the tile about a week ago, he said he would when he felt like it. That could be another month or more LOL.
Well, I will write more soon. Hopefully there will be less time between the next set of blogs.
~ Joy and Family