Tapering Tips

There is plenty of information on Prednisone as well as the side effects. One can find a list of illnesses that it can help, which lets be honest the list is impressive. There are articles and vlogs on coping with being on the medication. Additionally, there is a facebook support group dedicated to the drug we love to hate.

On the other hand, information on tapering is scare. Coming off Prednsione is a difficult journey yet there is little information to make it less.

Coming off Prednisone has nearly shut down my body more than once after months of tapering pain. I am now in a situation where my doctor wants me off by July. For obvious reasons I am not a fan of tapering. I am determined to try to not feeling like I’m dying while tapering.

I have been trying tons of little things to make the process a little easier. I know many people struggle to get off this medication so I want to share what I’ve tired with you. Please note this is only my personal experience.

Vitamins

I have added a substantial amount of vitamins to aid my body as it adjust.  The vitamins I chose are based on my personal research,knowing my body/history, and considering all my illnesses. It is too soon for me to say how well most of these work. Potassium and magnesium are must add vitamins especially for muscle pain.

Though it is not the safest vitamin for me I finally decided to add turmeric for a few weeks due to it’s anti inflammatory agents. It thins ones blood which is my hesitation.  Boswellia. It helps with osteoarthritis, rheumatoid arthritis, asthma, inflammatory bowel disease, EDS, and helps pain. Methylsulfonnylmethane (MSM) is another vitamin I added. This should help with arthritis pain, osteoporosis, and muscle cramps. I struggle at times with eating and I am well aware that I don’t get all the vitamins I need through food. Because of this I added Super Fruit and Veggies tablet. I also switched my probiotic to 40 Billion CFU Guaranteed.  I have no idea if these will make it easier to taper. I am not sure if I will stay on all of the vitamins at this point.

Many in the Prednisone support group suggest looking into CBD oil to help whatever the Prednisone was treating. CBD oil is through to help inflammation, appetite, sleep, and mood. Additionally, some use Kratom to help with the pain.

“Native to the Southeast Asia, kratom (Mitragyna Speciosa) is a powerful medicinal plant used by thousands throughout the world. The medicinal potentials of this plant are vast, some of the most prominent include: pain relief, opiate addiction treatment, mood lifting, energy and immune system stimulation.

There are entire forums on the use and benefits of this impressive plant, which speaks for this plant’s virtue more than we ever could.”

During The Day:

Gentle stenches and work outs are ideal with frequent breaks. Staying hydrated is vital while tapering.I have POTS and therefore, it is difficult to remain hydrated. I recommended checking out electrolyte tablets or powered.  Personally, I like the brands Drip Drop and The Banana Bag.

Of course, eating as healthy as possible is an assets. I have struggled with eating the whole time I was on Prednisone so this has been a struggle. I have slowly been adding in fruits as I tolerate it. Small meals are ideal.

While tapering I need to take more frequent breaks and pace myself. It is important to monitor heart rate, blood pressure, or blood sugar if needed while tapering.  I monitor my heart rate and blood pressure.I find that I get stressed out coming down. Therefore, it is vital for me to take time out for myself to de stress. Making a de stressing tool box can be helpful.

Sleep is vital to tapering. I don’t know about anyone else but I feel so drained while tapering. I have nearly no energy all day. Currently I am getting about 10 hours of sleep. Some people take naps. Either way sleep is vital.

Bath:

I recently got a magnesium spray but it is too soon to say if it is working. I have found baths to be extremely helpful with my tapering pain. I add a bath boom, Epson salt, and aches and pains bah soak. Don’t underestimate a  bath till you’ve tired it. I am going to be learning how to create bath bombs. If I discover a great recipe I will share it with you all. I always use Aches and Pain Relief by Village Naturals Therapy.

There are many topical over the counter options for many people tapering. Sadly, I am not one of them as most of these products have been irritating my mast cell. Some products to look into include icy hot, trigger balm (which was my favorite), Bio Freeze, or Bengay. In addition to creams, there are patches and sleeves too.

Slow and Steady

When tapering there is no such thing as too slow. The slower the better. Going slow allows glands to kick back on that have been asleep due to the medication. I fought for one mg tablets and finally got some. For the remainder of my taper I am decreasing by 1/2 mg. My taper schduel has been rewritten at least a dozen times at this point. So most likely, it’ll change again. However, at the moment I am planning to go down 1/2 mg every four days.

Another tip I have heard in passing is to alternate doses. I haven’t found this to be helpful but it is worth trying. Example 10, 7.5,10, 7.5, 10, 7.5, 7.5.

You need to find what works for you and stick to it. I am trying to convince myself to go as slow as I need to even if that means not getting off till August. I am not trying to be disobedient to the doctor but I need to do what’s best for my body at this point.

 

 

Advertisements

Med Changes

Chemotherapy. One of those words with plenty of weight. Plenty of assumptions attached to it. For example, only Cancer patients receive it, this is a  myth. It is only a word. Only a medication designed to assist an individual in some way. Autoimmune diseases are treated with low dose chemotherapy. Chemo suppresses the immune system and helps inflammation.

Personally, I have encountered three chemos to date to attempt to control my illnesses. First I did methotrexate self-injection. Than Mercaptopurine was added. (This combination is not advised.) I couldn’t handle that for long so we made the switch to  just Mercaptopurine.

I stopped Mercaptopurine the end of last month. Medication changes are challenging. Needless to say, it can increase pain and symptoms. It is a difficult medication to start and to stop. Though I am not a fan it did suppress my immune system some, therefore, stopping it increased pain. However, it was worth it because I have begun my journey with Remicade.

Remicade is a biologic which is received through an infusion. It can be used to treat Chrons, Ulcerative Colitis, Rheumatoid Arthritis, Psoriatic Arthritis, Ankylosing Spondylitis, and Plaque Psoriasis. Remicade suppresses the immune system, similar to other medications used to treat autoimmune disorders. Most times, to qualify for a biologic an individual must fail other treatments or have difficulties getting off steroids. The Remicade web page provides additional helpful information.

The first three infusions are loading doses and are given every two weeks. I had my first Remicade infusion November 8th (but I have been on another biologic and received other medications via an infusion). Personally, I pre-medicate in the car on my way to the infusion center. An hour before I take Prednisone, Benadryl, and Tylenol. The infusion lasts a total of three hours. I had nurses and a PA adjusting the speed of the Remicade every few minutes. In addition, they monitored my vitals.I felt beyond wiped out afterward as if the life was sucked out of me.

7-out-of-10_uc

That evening I was extremely achy. In addition, I had high pain in the lower right side of my abdomen. I was in bed by nine pm. However, that is the extent of the side effects I experienced. The joint pain was slightly better for a few days. I get my second loading dose soon. Eight weeks is the time frame that an individual should start to encounter improvement.

My next infusion is in a few days. I am extremely tired. The pain levels have returned to preinfusion. The weather isn’t helping any. The pressure is dropping. Additionally, we are expecting a mix of rain and snow. All in all, I am ready for my second infusion. Things feel much more hopeful on Remicade.

christmas-decorations-1814927_960_720.png

General Medication Guide

11888051_935586879797869_2349040824378437850_n       defb98b8c529869eb8db7a38901d05bd

I can recall a time when swallowing pills were my worst nightmare. I was never able to remember to take my multi-vitamin. And I would avoid medication like the plague. Those days seem a lifetime away in my past along with carefree sunny afternoons of childhood. If you are newly diagnosed, there is a lot to learn, it can be intimidating.

If you are newly diagnosed, there is a lot to learn and a lot that sounds scary. The majority of people with a chronic illness will encounter a medication at some point in time, for many of us, it becomes a daily part of life. It becomes as natural as brushing your teeth.

6bbc8c95f34fed14cfa29b423690ecde.jpg

Constructing a treatment plan and sticking with it is essential making a big difference. The positives and side effects need to be considered before agreeing to any medication. Listening to the doctors expert advice is vital. In addition, I recommend doing your own homework and speaking with others who have taken the medication if possible. Keep in mind that everyone’s body reacts differently. Your body will not react the same way someone else’s has. If you have a caretaker or support system it is also wise to get their option. Personally, I always talk to my mom letting her know what I have learned about a medication, side effects, how long it will take to work, and my thoughts. It is okay to say no if you are not comfortable with taking a particular medication.

Vitamins and Supplements

Vitamins and supplements need to be discussed with your doctor and carefully thought out. I have multiple autoimmune disorders, therefore, my immune system is overactive. Vitamins and supplements boost your immune system, so I need to be cautious as I select only what my body truly needs. Which vitamins I take does vary on what my body needs and what other medication I am on. For example, with Prednisone potassium is one thing I know I need to have. With Depo, I need calcium and vitamin D. If I feel like I am not absorbing things properly I increase my vitamin C. Balance is key. The only other supplement I typically take is fish oil which can assist in brain fog and inflammation.

Over the Counter

Interactions need to be checked, whether it is with vitamins, prescription, or over the counter medications. Again over the counter medications must be discussed with your doctor to ensure it is the best thing for you. By simply talking to your doctor you can avoid terrible interactions and side effects.

Organization:

Organization is essential in many aspects with a chronic illness. If I didn’t have a system, I would not take my medication or vitamins ever. Especially considering most of us have brain fog. I keep all my medical supplies in a crate. This not only includes my medication but also tiger balm, braces, and chemo supply. I also have a daily pill organizer.

PicMonkey Collage.jpg

Knowing when to take medication is important. Personally, I take the majority of mine after meals. Setting an alarm on your phone can be helpful. There are also free apps to help remind you to take medication on time. Having someone you are frequently with check in with you can also be useful.

DontForgetMeds-e1419270560885-300x300.png

Whenever I go out I use old pill bottles to store the medication I will need or might need. I have a makeup bag that I put everything such as my inhaler, that I might need while I am out.

How do you stay organized with medication?

Prednisone Part One

I have shared on here off and on about my treatment plan. My treatment plan has drastically changed after leaving the hospital. This is partly due to my liver and partly my doctors just being a bit annoying. I have been pulled off of Methotrexate and Benlysta.  Right now my main medication is Prednisone. I have decided to do a small series of Prednisone blog posts, hopefully someone will find it helpful. Prednisone, it is almost always a love- hate relationship. It is unclear which is better being on it or not. There are an abundance of harsh side effects, yet it is a life savior. 46bde1cc6919eb9cff7a962b8c6f5026

Most Spoonies know of  Prednisone, for those who don’t, I will give you a brief overview. By definition Prednisone is, “an analogue of cortisone,used as an anti-inflammatory,immunosuppressive, and antineoplastic in the treatment of various diseases.” Put simply, Prednisone is a steroid. The body naturally makes low amounts of steroids it is also classified as hormones. This steroid is not the same type that well known people such as sports players or movie stars take. Prednisone should be a fast acting medication. It is used for countless illnesses arthritis, blood disorders, breathing problems, severe allergies, skin diseases, cancer, eye problems, immune system disorders and additional illnesses.   download

There is a side effect overload when looking at Prednisone. The side effects range from irritating to utterly devastating. Some ‘mild’ side effects include: Abnormal Fat Distribution, Absence of Menstrual Periods, Acne, Disorder involving Personality Changes, Excessive Hairiness, Excessive Sweating, Feel Like Throwing Up, Moon Face, Visible Water Retention, and Weight Gain. More serious side effects include: Seizures, Infection, Low Amount of Calcium in the Blood, Thin Fragile Skin, and Anemia. Most people experience at least one side effect while on Prednisone. Every encounter with Prednisone is different. It is a difficult medication to be on. Many times it alters someone’s personality and how they look. Coping with side effects is a challenge. It is meant to be used short term, but that is not always the case. prednisone2

Check back this month for more Prednisone posts. I will be sharing my personal experience and talking about how to cope with Prednisone.

A New World

I have just stepped into the world of Methotrexate. Though I am a foreigner, I must admit I am excited to be on this journey. Let me back up. I am sure someone is thinking, “What is Methotrexate?” Methotrexate is a medication which falls into the following classifications: Disease Modifying Anti Rheumatic Drug, Immunosuppressants; Antineoplastics, Antimetabolite, Immunomodulators, and Chemotherapy. I’m sure the majority of this list looks Greek to you, just a bunch of medical mumble jumbo.

narniawardrobe

Methotrexate slows down the reproduction of various cells. It also decreases inflammation. It is used to treat diverse illnesses, however it is not completely understood why it improves some illnesses. It is also said to decrease pain and stiffness due to athirst. Methotrexate is used to treat Cancer, RA, Lupus, Psoriasis, IBD, and a handful of additional chronic illnesses. Though many people go on this medication only half of patients improve.

As with any medication, Methotrexate can come with a variety of side effects. Some include: dizziness, drowsiness, headache, nausea, swollen, tender gums, decreased appetite, and hair loss. It is essential to weigh the pros and the cons before beginning any medication. It is also vital to be extremely education this way you know what to expect.

58c56fee0bd9a729bb8f5f9091cea125

When my doctor mentioned Methotrexate, my anxieties about seeing a new doctor melted away. Excitement ran through my veins. I had researched and discussed the possibly of going on this medication a while ago though it seemed unlikely anyone would put me on it. The doctor offered give me information on it and allow me to think about beginning the medication. Consumed with disappointment I informed her that I was educated about this medication. That’s when she decided to begin me on a low dose of Methotrexate. I do believe this is a positive move for me. I feel like this medication will work well with my body. I am hopeful that I will be able to function more the longer I am on it.

hope9-593x348

Currently I take Methotrexate orally, pill form. It also comes in a self-injection, which sounds ideal to me because it gets into your system quicker and there are less side effects. I only take it once a week. I took my first dose Friday night, around 8 pm. I chose to do it on the weekend this way, once school begins again I have time to recover. Most people say it is best to take it at night this way you can ‘sleep off’ the side effects. I agree 110%.

I did have slight anxiety about beginning a new medication, due to the reaction I had to Reclast (https://chronicallyhopeful2014.wordpress.com/2014/10/25/reclast/). I think it is normal to have some anxiety when altering your treatment plan.

I ate dinner around 6 pm then completed my evening routine. I had a few crackers 15 minutes before taking it. I made sure I was comfortable, had anything I could possible need, and relaxed before taking it. . I felt completely fine, until I stood up. Then I began getting dizzy and some nausea began to set in. Fatigue and nausea slowly but steadily increased. An hour and a half after I began getting a head ace, but it was mild. I had peppermint tea to help settle my stomach. Before I went to sleep I was experiencing mild dizziness, headache (6), slight increase in upper abdominal pain, extreme fatigue, nausea (7), and feeling a bit foggy. Two hours after taking Methotrexate I went to bed.

fb3866c4ca70d2c78bfb9575f5814c78

The ‘side effects’ I experienced were not out of the norm for me. Honestly I had expected it to be a lot worse. I have heard that the first two doses are the worse. I think my first dose went very well.

I did not sleep well that night, which is most likely due to the fact that I had my Benlysta treatment that day as well. The following day I experienced a lot of nausea. I did have fatigue however I cannot blame it on the medication because that has been an ongoing issue.

eadd082b698fed8a0f113877ac1f6118

I hope if you are considering beginning this medication that you found this blog post helpful. Please feel free to ask questions. I will be doing a Methotrexate survival guide in the future. Sending spoons, prayers, and hugs. ❤

The Past 48 Hours

The past 48 hours have been drenched with blessings as well as apprehension. Yesterday my friend came over, which is a treat. I have been so ill that I hardly see any of my friends or go out with them. Being able to have tea and talk was marvelous. Those couple of hours are something I am immensely grateful for. I cherish the moments I spend with my family and friends.

I received a phone call, moments before my friend left, from the infusion center. The nurse informed me that my infusion was being cancelled because someone neglected to complete paperwork for the insurance company. In addition the nurse told me they had no idea when I could receive my infusion. My insurance company only approves me for my infusion for six months at a time, then it needs to be re-approved. I questioned the doctor as well as two nurses in the infusion room regarding the paper work and was assured that everything was in order, there was nothing I needed to do. It is vital for me to get my infusion on time. The day before and day of my infusion are extremely difficult. I know getting my infusion late- even by a day would throw off my body.

I called my insurance company, even though I was certain there was nothing they could do. Thankfully I was wrong. The person I spoke to was compassionate and was able to speed things up. Even though we did not know this morning if I would be able to receive my infusion, we headed down to the doctors. I made several phone calls on the way down. As I was speaking to the third person at my insurance, the approval went through.

They began my infusion an hour late. Time during the infusion crawled by as my pain intensified. In addition to my Lupus pain I was having terrible abdominal pain from kidney stones.

My doctor moved. Therefore I am now a patient of one of her former co-workers. I dreaded seeing a new doctor. I have encountered many  quacks, uneducated, and disrespectful doctors. My health is very complex it is annoying and sometimes difficult to get a new doctor up to date with everything happening.

To my delight this new doctor had reviewed my records and spoke to my previous doctor. She was also educated about my main illness, eager to assist me, and kind. After much discussion she prescribed Methotrexate.

I feel extremely blessed how the past few hours have unfolded. I never imagined this would happen. I am over joyed and very thankful to begin a new chapter in my treatment plan.

Sending you lots of prayers, spoons, and hugs ❤

*Methotrexate blog post coming soon! Be sure to subscribe this way you don’t miss it.

Benlysta

If you are a Lupie, there is a good chance that you have heard of Benlysta. For those of you who have not heard of Benlysta, I will give you a brief overview. Benlysta has been the only medication specifically developed for Lupus. It took underwent years of clinical trials and endless hours of research. It is intended to be used along with other Lupus medications. Benlysta is a biologic which is given in an Intravenous infusion once a month. There are still some trials being run on it. If you are interested in learning about how Benlysta beneficial in the treatment of Lupus I strongly encourage you to check out there webpage: http://www.benlysta.com/. Personally I have found the videos on the webpage educational as well as the information kit I received in the mail.

article-2199897-14E47F6D000005DC-372_468x300

It is essential for me to educate myself about medications prior to beginning them. I began researching about Benlysta a year before I began my first infusion. I read as much as I could about it, watched various videos, and spoke to others on Benlysta. I discussed the things I learned with my parents. I had my heart set on trying Benlysta. When my doctor mentioned beginning me on the medication, I began the paper work without hesitation. Once I got insurance approval I enthusiastically began my loading dose infusions. I got Benlysta every two weeks for three loading doses then went down to once a month.

hanging-iv-bag

Many people recommend eating protein the night before and the morning of the infusion. I get sick if I eat large amounts of protein, therefore I eat about half the amount of protein that other people consume. It is vital to remain hydrated before, during, and after the infusion.

download

Before I get my Benlysta I usually get blood work done. Then I get IV fluids and premedicated. Premedication varies from person to person. I take two Tylenol orally and get Benadryl and Zofran in my IV. The infusion it’s self is uneventful though personally I endure a lot of pain during it. (Most people do not experience this much pain. My body likes to be different)

Benlysta takes time to work. Waiting is difficult when you have endure so much pain for a long period of time. Everyone notices improvements at different times. However it is said that one does not get the full benefits until a year after beginning the treatment. I have been on Benlysta for six months now. I am going to briefly share my experience, however I urge you to keep in mind that my health is not stabilized and there are several factors as to why I have not had more benefits from this treatment. I noticed a difference from the start in pain levels. However it was short lived. I only received relief for 5-8 days.Within a few infusions my hair loss drastically got less. After my infusions I was extremely itchy until my last one. The itchiness did get better with time. I have my infusion around the time I eat lunch but I cannot eat during my infusion. Sometime my appetite decreases a bit before my infusion. I usually have trouble sleeping the night after my infusion. Everyday before my infusion becomes more difficult and more painful. My body seems to crave the treatment so much. It feels like it completely abandon my system too quick.

Though I was hoping for a drastic improvement, I am grateful everyday that I receive Benlysta. I hope as time goes on I will improve greatly.

10457184_10204169147255634_5988680020757243988_n

Please share your experiences with Benlysta in the comments. Feel free to ask questions as well.