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Actemra as a possibility for My RA

My journey through the biologic DMARDs  began with infusions of Rituxan. I had no relief from my RA with Rituxan. Next in line were infusions of Orencia. Orencia gave me about 20% relief. At the time it was better than nothing. Orencia worked for over nine months and then stopped working. At the time I had a worse than normal flare and developed a horrible flu. Up to that point I hadn’t had a cold or a sinus infection for 3 years.

After about six weeks I was started on infusions of Remicade. Remicade has three loading doses scheduled 2 weeks apart. I completed the loading doses and then became terribly ill. I felt like I was in ‘a failure to thrive’ situation. Absolutely no energy, listless is a good word. I moved into a bad flare which overshadowed the side effects of the Remicade. I was in a bad way for over a month.

Remicade is a TNF inhibitor (TNFi). The recommended suggestion is that if a TNFi is stopped because it doesn’t work, another TNFi might be tried.  If a TNFi is stopped because of side effects, a non-TNFi should be tried next.

After my bad experiences, I was ready avoid the biologics. Medrol does save me through tough times. However, my RA is getting worse. I have a hard time walking. I have never been in remission (4 years). Wherever I have a synovial membrane in my body, it is inflamed. My tendons have joined my joints. I have a creaky body.

Fortunately, I love to read and I love to write. I can do both with RA. I have a garden. Some days working outside is very hard to do. I do it. It keeps me moving. I love my garden. I love to knit.  I  love to cook dinner for my son. Life is good in spite of RA. But it is starting to be less manageable. I have a cane. My son carries heavy things for me. Sometimes it is very hard to go shopping. So I took another look at my Doc’s last suggestion, Actemra.

I pulled out the Actemra brochure my Doc had given me. I had thought that the mode of action might work for me. Then on the cover of my brochure, I saw the following words,

Important Side Effect Information.                                                                           ACTEMRA changes the way your immune system works. This can make you more likely to get infections or make any current infection worse. Some people taking ACTEMRA have died from these infections.”  

This got my attention. I remembered clearly my problems with my last two biologics. I did not want to have an infection or worse. Maybe I’m not a match for Actemra.

I had histoplasmosis when my family lived in Nebraska. It is a fungal infection and affected my lungs.  I had a garden there also. I also possibly had a case of diverticulitis (according to an ER doc). ” Some people taking ACTEMRA may develop a hole in the wall of their stomach or intestines.” I don’t want to die from this.

Of course, I have to evaluate the part of the medication insert that I understand.

With 4mg/Kg:                                                                                                                                    9%  had a 70% improvement                                                                                                           24% had a 50% improvement                                                                                                               43% had a 20% improvement

With 8mg/Kg:                                                                                                                                       19% had a 70% improvement                                                                                                               37% had a 50% improvement                                                                                                         59% had a 20% improvement

So is the likelihood of a 20% improvement worth the risk of death. I don’t think so. Too bad. But the risks are too high for the limited reward. My RA is bad. I am one of the unlucky ones. I still feel life is good. So I will pass on Actemra.

Methotrexate NSAID or DMARD ?

I can now count myself  as one of the few who has read the package insert for methotrexate. I am researching RA drugs for my book.  I give myself injections of 25mg methotrexate weekly. I was opening a new box and preparing to give myself an injection.  Impulsively, I decided to read the insert. Methotrexate has become the gold  standard for RA treatment. It has been one of the few drugs to help relieve my symptoms. Imagine my surprise when I read the following.

Medication guide insert with boxed  methotrexate; “Although methotrexate clearly ameliorates symptoms of inflammation (pain, swelling, stiffness), there is no evidence that it induces remission of rheumatoid arthritis nor has a beneficial effect been demonstrated on bone erosions and other radiologic changes which result in impaired joint use, functional disability, and deformity.”

So since it doesn’t stop RA progression how can it be classified as a DMARD, Disease Modifying Anti Rheumatic Drug?  Shouldn’t it be a NSAID,  Non-Steroidal Anti-Inflammatory Drug?

MY RA Book

 

I am making progress! I started writing a book on RA a year ago. I have deep experiences as a patient. I have read extensively. I have written extensively. I have read much about other people living with the challenges of RA.  However, my book is starting to look like a textbook. This is not my intention.

Fortunately for me I read a short book on organizing a kindle non-fiction book. It all made sense and I am now ready to go. I plan to have my book up and ready by midsummer.

Unfortunately,  my RA is on a steady progressive course. I have tried most of the drugs on the list for RA and only a select few work. I am not one of the fortunate ones who make stunning progress with the biologics. I am grateful that they do work for some. Still I have to plod along my own RA path.

My book will put together the RA basics for a grounded base. It will discuss the role of advocating for yourself as vital to your progress. It will discuss strategies and self help to aid you on your journey. It will have suggested reading and suggested websites.

I remember when I was diagnosed. Information was given to me on a need to know basis. I needed to know so much more.  I searched the internet looking for the clues that would tell me what would happen to me.

Finally, I have answers and I would like to share them.