Hello! Well, I am excited but trying to remain controlled. You see, I am actually feeling better, much better than I have for some time. I am not sure why the change but I will take it. Remission is a word all of us with lupus want to hear. To be fair, I am hoping it is remission but the doctors say I have to be feeling good for six months before we can actually call it remission. So for now, let’s just say I feel good.
When I say I feel good, I mean that yes, there is pain, but the pain is minimal. It does worsen at times but I am not a slave to the pain right now. I have been to the rheumatologist and my labs are great, with the exceptions being my SED rate and ANA. My doctor wrote me a prescription for prednisone and wants me to take low levels for a bit. I took three days worth and stopped because I felt better before I took it. It is good to have around in case of flare up though so I am armed and ready should a flare decide to come a calling.
Since my labs were pretty good, the doctor decided that I do not need the benlysta infusions for now. I was on the drug trials for that drug and it really did help me when I was taking it. I was on the trial of injecting myself in my stomach. It was not difficult and it did help so I am glad the infusions are there should I need them.
For those who are not sure what a lupus remission is, here is some information I culled from lupus.org:
How is remission in lupus defined?
There is no formal, approved definition for lupus remission. However, the word “remission” is sometimes used to describe certain situations. One situation is a person who presents with a disorder which appears to be systemic features of lupus but after a while, their symptoms, physical exam findings, and blood abnormalities go back to normal and stay that way, even after any prescribed medications are stopped. Some doctors might feel that the person did not truly have lupus, but probably had something else causing lupus-like problems (which can be seen with certain infections, such as parvovirus infection.)
The more common usage of the term “remission” would be to be “in remission on medications, or quiescent (quiet).”” This would mean that the person with lupus is taking Plaquenil® (hydroxychloroquine) and/or other medications and is doing well with no evidence of lupus manifestations such as arthritis, rash, kidney involvement, blood cell count problems, etc. This is the goal for most people with lupus, but is not always possible.
When a person is in remission while taking medications, doctors always try to taper steroids down to the lowest possible dose, and, if possible, to stop them. Most people are counseled to keep taking Plaquenil long after the disease is quiet. Non-steroidal anti-inflammatory medicines such as ibuprofen, Celebrex®, naproxen (Naprosyn®), etc. should be stopped if there is no pain. Immunosuppressant medicines (such as methotrexate or Imuran®) can sometimes be decreased little by little, but this all depends upon the exact history of the individual’s disease.
Medically reviewed on July 18, 2013
So there you have it. Yes, I am still on my medications. I am taking my plaquenil daily. I have prednisone for any bumps in the road. I am taking Tylenol daily still for my knee. Otherwise, no chemo drugs (Yay!) and all is quiet right now in my body. I hope it remains this way because I have so many things I want to do and have been unable to do. Who knows? Remission? Maybe. Possibly. Hopefully. We will see.
On another topic, do any of you garden? This spring I am planting my garden and I have already started some seeds. I get my bean and tomato seeds from a neat place that has non GMO heirloom seeds from the Appalachia regions. They are truly great producers of veggies and taste so much better than those modified seeds do. The place I get the from is in Kentucky. It is called http://www.heirlooms.org. I highly recommend their seeds and they show you also how to save your own seeds year after year. The mans name is Bill Best and he will talk to you and help you in any way he can to preserve the seeds that are nutrient rich and much tastier than anything on the market.
If you garden how do you preserve your foods? I dehydrate and can plus I do freeze a little. I would much rather have my food shelf stable in case of electricity going out. I find pleasure in growing the garden and preserving it so we have good foods that I grew and we can have them in winter. I love the whole process. It makes me feel good. Plus, I love to cook so it really is enjoyable. I know what is in the food, any additives, and it is much healthier than buying the food at the store.
Hope you are all feeling well and that the warm weather lifts your spirits!