Happy Friday! So I figured now would be a good time to update everyone about what has happened over the last few days. I wanted to wait until after my appointment with my specialist on Wednesday so that I would know what the plans were before sharing with all of you.
On Tuesday of this week I saw a new rheumatologist down in Kingston who was excellent. I really liked him and his team of nurses who work with him in his office. He went over everything that has been going on with me and looked at all of my medications, etc. He was very thorough and he also agreed that I definitely have hypermobility and said that if I hadn’t already been seen by my specialist at Sunnybrook and been diagnosed he would have done it right then and there. So then we talked about Humira, my psoriasis, my IBD and my possible psoriatic arthritis. He said the psoriatic arthritis is most likely there but because of the hypermobility issues/EDS it could be either/or that is causing me immense pain, regardless, the psoriatic arthritis will be treated by the same medications so it’s fine. With that being said, he has determined that Humira is not working and was quite certain that if it hasn’t started to work at all yet then it’s not going to. I won’t lie, I don’t know if I was totally expecting him to say that but I had a feeling it may happen. He told me that he felt very strongly about this and if I was his family member he would honestly still give me the same advice in regards to quitting Humira and getting on a combination treatment of two medications that they have had fairly good success with. This was honestly more reassuring in a sense because I figure if he is confident enough that he would treat his own family the same way then I trust that he is right about me too.
So on Wednesday I met with my GI specialist who after reviewing everything decided to go ahead with the treatment proposed by the rheumatologist. Now, here’s the part that kind of sent me spinning a little, the one new drug that I have to take is Methotrexate. It is a chemotherapy drug that I have to inject into my muscle once a week. Yesterday (Thursday) was my first injection so I will be taking this medication every Thursday and although it was harder to convince my brain that stabbing myself was ok, I managed to give myself a pep talk and all went well. The reason this one was a little tougher than the Humira is due to the route of administration. Humira is administered by the subcutaneous route so it’s a much smaller/shorter needle and it basically just injects below the skin into the fat tissue but for Methotrexate, the route of administration is intramuscular so the needle is bigger/longer and it has to reach down to the muscle. It seemed to all work out ok, although I do have some muscle tenderness but that is totally normal. I did experience some side effects yesterday, mostly headaches, nausea and fatigue but everyone I’ve spoken to have said that the second day is harder and they weren’t lying! Today has been much worse with nausea, weakness, fatigue, pain, memory trouble, etc. But never fear, I will fight through and continue on! Now the way methotrexate works is by interfering with the growth of some cells in the body, usually ones that rapidly reproduce (examples would be skin cells, cancer cells, etc.). For someone like me who has psoriasis this medication should help to slow down the rapid production of skin cells, therefore, hopefully reducing my psoriasis. I still feel like it hasn’t quite sunk in completely that I am really taking a chemotherapy drug. It all just happened so fast and we want to cause the least amount of delays in my treatment so there hasn’t been much time to really sit and process everything. There are obviously things to watch for while on Methotrexate, it can deplete blood cells that help to fight infection so it’s important to protect myself and avoid coming in contact with germs/sick people. Routine blood work is also important in order for my specialists to keep an eye on different levels so we can watch for any problems. Also, since methotrexate interrupts cell growth, it can also interfere with healthy cells which can cause issues and complications (an example would be mouth ulcers) but one way to protect other cells from being effected by the medication is to take folic acid every single day, except on injection days.
The second medication is called Inflectra (basically a drug that is bio similar to Remicade) and it is given as an infusion by IV. It will take a couple of weeks to get that all sorted out but the good thing is my GI specialist moved to the office space next door and he’s setting up his own infusion clinic right there. This is good news because the alternative would have been driving 40 minutes away to Peterborough to an infusion centre. Now Inflectra is a new drug that has just been approved by Health Canada and it is provided by Pfizer. I’ve already been in touch with the patient care team that takes care of all the financial stuff, paperwork, etc. My case specialist seems very nice and she will be following along and available to me for any questions or concerns that I may have. This is very similar to the patient care program that was provided to me when I started Humira and it is seriously an amazing idea. So anyways, I should know by next week or the week after when my first infusion will be. I don’t know much about it yet other than the appointments take about 4 hours, the first hour is prepping me, pre-medicating me with hydrocortisone and then the infusion itself takes 2 hours. After the infusion is done, I have to stay and be observed for about an hour but after a few times of going I can opt out of the observation if I want too. I was also told that there is a loading dose period so the schedule starts out with infusion one being week 0 and then I go back at week 2, week 6 and then every 8 weeks thereafter.
The last thing we discussed at my appointment on Wednesday was getting me a port. My veins are basically no good from all of my illnesses and multiple IV’s over the last year and a bit so a port being placed will provide much easier access for the nurses and I believe most ports can stay in for around five years. This is also being organized at the moment so hopefully by next week I’ll have an idea of when that procedure will be happening because then we’ll be able to get me on an infusion schedule as well. The port is a small device that is inserted under the skin on your chest and then a catheter is threaded into a large vein in that area. I’m hopeful that this will make things much easier for me and the nurses, as well as, provide me access to administer IV fluids when necessary to avoid having to go to the ER for treatment of dehydration due to flare ups and/or medication side effects.
Well that’s my update for today, as things start happening I’ll be sure to keep you guys informed. If I’ve missed something here or mixed up my explanations in anyway I apologize, I’m burnt out! I’m definitely not feeling well today so more resting and medications are the plan. Have a very safe and happy long weekend!
Wishing You All Health & Happiness,
**Disclaimer: I am in no way affiliated with any companies and/or products mentioned in this blog post. I’m speaking strictly from my own experience and all questions or health concerns you may have should be discussed with your own medical team**