Well guys, the end of Stelara came during November 2014. It was a good run - 3 years on a biologic is pretty good. I had to be hospitalized on New Years Day for a Crohn's flare. Spent 3 days in, but not much better, as they didn't send me home on prednisone. Called my gastro and started on 40mg on Jan 5, 2015.
Also started going to the local Pain Clinic. My dr is amazing. He raised my Fentanyl saying that I wasn't absorbing the oral pain meds - maybe 25% on a good day. Left there and didn't take another oral pain pill for several weeks.
Then came Feb when I started a new biologic Crohn's med called Entyvio. First treatment on Feb 13. Ached like crazy for the next 4 days and had extreme nausea and vomiting - common side effects for the first few treatments. Two weeks later was the same story. During this time, I also had 2 colonoscopies and an endoscopy. Showed active crohn's - yeah I knew that.
The pain was getting unreal. Eventually, my whole left leg became swollen. The joints locked from the inflammation. The ankle was so bad that I thought I had torn the Achilles tendon. Took a full week to be able to even put pressure back on my left leg. I had to use a walker or hop through the house. Went to the ER on Sunday night and actually fell in the bathroom as their wheelchair didn't fit through the door. I tried to hold on to items but missed and fell on my hip.
By mid March, the skin lesions (pyroderma gangrenosum) came back. At first it was mild, knots in my hand and feet, very sore but didn't rise above the skin. In April, Imuran was added to help the Crohn's and the PG .Then came the treatment on May 28. On June 1, I woke with 1 very large lesion on my left leg. By evening June 2, I had 18 lesions on both legs. I had difficulty walking. It felt like my bone marrow was on fire. Round of prednisone and it started to heal - until I dropped the dose.
June 17, I had a biopsy which showed nothing in particular. No one could make a decision on what was the cause, so no treatment could be started.
Between Dermatology and Gastro, they decided to do the Entyvio at 6 weeks instead of the 8 week protocol. This made the lesion explode. I kept going back in to derm and gastro begging for help - and several trips to the ER. I told a couple friends that I believed having my leg removed would be less painful than the PG.
Pyroderma pain is like no other pain I have experienced. Think of having the worst toothache ever - but expand it to the whole leg. Then rub Habanero pepper over open wounds. Now, take a hot iron and press it into the skin till it burns the skin away - and I'm not done yet - there is burning pain coming from the bone marrow also. Lastly, add electrical shock to the lesions. This is the best way I can describe this pain. It is something I would not wish on my worst enemy - but I can tell you that this would be the best way to get any one to confess to their crimes. Give them this for 1 hour and tell them you will end the pain if they lead the detectives to the body. It would be the best way to get any and all information from terrorist too.
I went to Mayo on Tues morning (July 28, 15) and I stated I was not leaving there till I was admitted. I knew that I needed IV steroids to bring this under control. Dermatology wouldn't admit no matter how much I cried and begged. If the lesion was not open and bleeding, they couldn't. Did my lab work and my gastro called. She told me to go to the ER and explain this - that I was in a crohn's flare (though I feel better with the new med, all tests so active crohn's). This causes me not to be able to absorb oral meds. She told me that if the ER needed her, she would explain this to them, but she couldn't tell them to admit me. I wasn't in the ER for even 45 min and admission papers were started. One dose of IV steroid and 1mg Dilaudid had me the most pain free I had experienced in over 2 weeks.
But by Wed, they were ready to take me off the IV steroid and IV pain meds. I told them okay on the pain med but don't touch the steroid. My gastro stepped up for me again and they kept both, but dropped the dosage of pain med. Thursday morning, my leg looked 100% better and I was going 8 hours between pain shots. And the best news was, I was at least able to bend my knee and put pressure on my foot.
Got several med changes also, but these are the ones I had asked about for at least a month. Took them in 2011/12 and it brought the pyroderma gangrenosum under control. Dr is thinking of adding a different immune modulator soon, as this med can only be used for 2 years then have to be off for 2 years.
Because of Entyvio, Prednisone, Cyclosporine (and remaining Imuran) I am extremely immuno-compromised. The drs added Pentamidine to prevent pneumonia. They had to put me in a box with plastic wrap around it. No one could come into my room for an hour after the treatment. It is once a month. Will have to travel to Mayo for this also. It is usually used for HIV/AIDS patients along with those who have had bone marrow transplants.
Between now and the end of the year, I will be traveling to Mayo Clinic in Jacksonville every 2 weeks. At least once a month, we will have to stay overnight to allow me to recover from the treatments.
Each Mayo trip is a 500 mile round trip and average cost for trip and overnight stay is around $300. Sometimes an overnight stay will easily turn to a 3 to 4 night stay due to side effects. Hotel is between $75 and $109 (tax is included) and food for 4 runs $15 to $20 a meal (we eat dollar menu and often get TV dinners or lunch meat from the grocery store). We have been doing this for almost 5 years (Sept 23, 2010 was first trip).
Our family has uncured extreme debt due to all the trips, medical ins, and prescriptions. I am not including my sons or my parents ins or Rx's in this - my bills run around $600 a month without travel expenses. Parents and son's expenses for ins and Rx's are around $850 a month.
I do qualify for Medicaid but they wouldn't cover even half of my Rx's nor would some of my drs even treat me. I would be dead if on Medicaid. They would tell me just to get the bag again instead of paying $15,000 (yes, 15 thousand dollars) every 6 to 8 weeks for 1 medication. The last one I was on costs $23,000 every 8 weeks and it wasn't even approved for Crohn's yet.
I don't have disability yet either. Been fighting for it since Aug 09 and am denied each time, and lost the appeal battle so I have to start over from the beginning again - as they say Crohn's isn't in their list. But I am 37 years old and have 38 major diagnoses - even bone death from years of steroids. I take 27 Rx per day (multiple tabs of most of those) and then I have more meds given at the Dr office - for a total of 34 regular meds. This doesn't include emergency medications like antibiotics or cough meds when I have bronchitis.
My family is in desperate need for financial assistance at this time. I owe over $12K at Mayo but we are in a payment plan right now. They ask for 10% of the bill monthly, but we can't do that. My parents don't bring in enough in retirement and SS to even pay the reg bills and medical costs. Need another $800+ a month to handle that.
Our car has 247k miles on it and it won't be long before it goes. My dad keeps it up, but at 14 years old and that many miles, we are not going to see many more trips on it - esp adding over 1,000+ miles a month to it. I do have my car that was totaled last year (repaired and had to go through state inspection to get it back on the road), but it barely has an AC - it blows but not cold air. We have been dealing with heat indices around 115 all summer. It has 198K miles on it at 19 years old.
We are doing everything we can to bring in money. I make jewelry and now have a retail outlet (a gift shop at a local aquarium), but I have brought in $52 in the last 2 months, Total sales this year has been $127 - for 7 full months. Some months at the consignment shop, I lost money due to giving 50% of the sale to them and paying taxes. One month sold 3 items and my check was $7.53 cent. Dropped them after 3 months.
I am asking for prayers also - mainly to get back on my feet and not need all these medications. Many of them have horrible side effects that have destroyed my body and cause me to have to take 4 and 5 other Rxs, some issues I will not recover from without surgery. For example the bone death. Only having a hip replacement will fix this. Just found out that also the Tibia of the left leg is beginning to die and crumble.
Second is that we have a financial miracle to cover all our needs - that I am able to sell all the jewelry I have on hand. I use birthday and Christmas money - and 20% of previous sales to reinvest in supplies.
I will share more about Osteo-necrosis and pyroderma in another blog. Will also share my med and diagnoses list with information about each one in the coming days.
Thank you all for reading through this and praying.
~Joy and the Odom Family