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Category: arthritis (Page 2 of 3)

Embracing Prednisone

June 24, 2013 / / 5 Comments

I am back on prednisone. There, I said it. Anyone who follows my blog knows how I feel about prednisone. It is a miracle drug and a drug from hell all mixed into one small white pill. Over the past four years or so, I have been on it more than I have been off it. However since I started seeing an integrative medicine practitioner last November, I was able to wean off prednisone at the end of January and have been off it ever since. Folks, that is the longest I have ever been off of it; FIVE whole months!

Now, I  saw my rheumatologist in April which was about a month before my wedding. Because of the increase in joint pain, she wanted me back on 10mg of prednisone or Arava. It was my choice based on the side effects. I gave it a lot of thought, gave it another week, and decided to hold off. And no, I never called my doctor. I am not an advocate of going against doctor advice so please don’t leave me comments saying I give bad advice. People have sent me those types of comments and e-mails. I did what I thought was best for me. Maybe I will be right. Maybe I will be wrong. I followed up with the integrative medicine doctor, I clamped down on my diet, and my pain got better. I made it through both days of my wedding very successfully.

After the wedding, it looked to others I was doing well and I kind of was, to a point. But I was having issues. I think what was really happening was because I was feeling better, I was more active which then caused my symptoms to flare. Also mentally, I am coping MUCH better with my symptoms, especially my pain. And that makes a big difference. So whereas before I would go back on prednisone, I really tried to tough it out. I spoke with my integrative medicine practitioner again because the amino acid supplement dose she had me on was doing wacky things to my body and I had to come off it completely to make sure that was the issue. My hormones had gone bonkers and she told me that this could happen. The mood swings were enough to make me stop the amino acids temporarily at least. However she did add in an anti-inflammatory supplement called boswellia and then told me it was going to take about a month to work.

Shortly after this appointment, I realized that things were still getting worse. Now “worse” for me is all relative. Even though I was doing “worse”, I was still functioning much better than last year. However my fatigue had come back with a vengeance, I constantly had pain, tenderness, and swelling in my glands around my face, less exercise tolerance in terms of joint pain, and the issues with my bladder, which I still have to see a urologist for, intensified. My option was to call several different specialists about each issue or just go back on a course of steroids to see what improved and what did not.

Luckily, my rheumatologist is flexible about my dosing of prednisone and when I take it. She makes suggestions and also relies on me to figure out what I need depending on what is going on at the time. That is hard for me sometimes. While I appreciate the flexibility, I am stubborn about being on traditional medications because I know that most of the time, the side effects can be just as bad as the Sjogren’s symptoms. I have a lot of arguments with myself about the prednisone. I still feel very strongly that it is NOT the answer as a constant modality of treatment for Sjogren’s syndrome because it suppresses your immune system. It does not treat the cause of the illness. That being said, I think that when you are in an acute situation, there is a definite place for it. The problem for me is trying to decide when I am in an acute phase. Having a serious asthma flare or joint pain so bad I cannot walk is acute but I also think that maybe when there are several less critical autoimmune issues going on at once, my body is telling me that it desperately needs to bring the inflammation down.

I struggled with the decision to go back on prednisone because I felt like I had come so far with my alternative treatment. I also do not want to go back on the medication regularly. But then I realized that enough was enough. I needed to do something to get me through this period of time until the integrative medicine treatment plan was more effective. I was also concerned not just about my pain levels, which for the most part I was coping with, but about the possibility of what the disease and inflammation was doing to my organs. I decided to start myself on 20mg and do a one week course by starting at 20mg and tapering down every two days until I reached 5mg and then stop. Typically prednisone needs to be weaned down slowly but this is only if you are taking it for two weeks or more. I have done steroid tapers like this before for my asthma and also for severe allergy issues.

Today is Day Four and I am so grateful that I put my negative feelings about prednisone aside to try this course of treatment. I have never started at this particular dose or done the tapering exactly in this fashion. The 20mg has been enough to settle things down quite a bit but not enough to send me bouncing off the walls in a constant mood swing. I am still sleeping well and although I am a little hyper, I can sit still and rest when I need to. I am not even sure I am hyper as much as I am just feeling normal and like I have enough energy to get through the day. This has by far been my best experience with prednisone. Until I started this week course of prednisone, I did not fully appreciate how bad I was feeling. I was getting through it because my mental state was in such a good place. The gland swelling and pain is almost gone, my joints, especially my shoulders, are dramatically better, and I am not in agony when I go to the bathroom. I don’t know what will happen when I come off in a few days but I am hoping for the best. Because if the best happens, then I have a new way to use prednisone for when things get really tough and unbearable. Or for when I go on our honeymoon to Disneyworld in September.

Now if I go through this week’s treatment and things get bad again, I will have to discuss this with my integrative medicine practitioner and my rheumatologist. No matter what, I still have to follow up with the urologist. But meanwhile, I have helpful information to pass on to him about the prednisone helping that issue.

I guess what this current run with prednisone is teaching me is that my medical treatment does not have to be all black and white. It doesn’t have to be the doctor’s way or my way; the rheumatologist’s way versus the integrative medicine practitioner’s way, and it doesn’t have to by high doses of prednisone versus nothing at all. It’s about listening to my body and trusting myself. It’s about trying to combine the best of what integrative medicine and traditional western medicine has to offer while aiming for the one most important goal: to get my body to a level of functioning that is sustainable and tolerable to me as an acceptable quality of life. I know I will never not have Sjogren’s; it will never leave me. But meanwhile, I will continue to do my best to optimize my health and give myself the best life possible.

Low Dose Naltrexone Update

February 23, 2013 / / 11 Comments

It’s Saturday morning and a perfect time for blogging. Life has settled down quite a bit here over the past few days. Life has been nothing but complete chaos and stress since about November and despite the fact that I think I have handled the stress fairly well, I am praying for no more crises for at least the next few months. The rest of the year would be nice too!

I have been playing catch up this past week with a lot of things I have neglected as of late, namely wedding planning, housework, and agent hunting for my book. More importantly, I have been trying to catch up with those friends and family that I have been neglecting and I am slowly but surely accomplishing that. I also have a list of health related blog topics in my head that I really want to write about as there has been so much going on and I think that the experiences I have been having might be useful for people to read about.

I think today I am going to start with an update about how I am doing with taking low dose naltrexone (LDN). I have been getting e-mails from people asking me if the LDN is working, if I am having any side effects, etc. The first post I wrote about LDN you can find here: Low Dose Naltrexone. If you have an autoimmune disorder, I think the post is worth a read. LDN is also being used for other illnesses other than autoimmune diseases but I try to write about what I know based on my experience and that experience is with taking LDN for Sjogren’s syndrome.

When I wrote the first blog entry about LDN, I was five weeks into taking it. Now I am about ten weeks into it. Since the five week point, I have been able to completely finish weaning off of prednisone. This was no small feat mind you. I had been taking prednisone for about fifteen continuous months, with the exception of one month where I had weaned off and had to go back on it. I did have some difficulty coming off the prednisone and the withdrawal symptoms were tough for the first two weeks or so, but my body seems to be slowly adjusting.

Before I came off the prednisone, and while on LDN, there was a period of about three weeks where I was feeling amazing. I mean, AMAZING! I went into my rheumatologist’s office for a routine appointment and told her that I had not felt that way since before all this autoimmune fiasco began, which was five years ago. Can you imagine feeling like yourself for the first time in five years?!? It was incredible.

However of course that did change when I stopped the prednisone but I am trying to be patient and give my body the time it needs to adjust. Part of thinks that it would have been nice to not have messed with the prednisone and enjoyed feeling good for a while longer. However the other part of me felt stronger that I did not want to be dealing with prednisone withdrawals and possible flare up issues closer to my wedding, which is three months away. This weekend it will be one month I am off the prednisone and that is usually my tipping point for things to go awry so I am crossing my fingers. Speaking of awry, at this point I am only having two issues, severe itching and hair loss. I thought the issues were related to coming off prednisone or perhaps even related to an autoimmune flare starting, but it appears this is probably not the case. I will hold off on the details of that situation for now until I have more information.

Overall, I think the LDN has had a positive effect on my autoimmune symptoms. When I came off the prednisone, my migraines initially got worse but are improving with the help of a supplement I was given by my integrative medicine doctor called petadolex. I have begun to have some minimal joint pain in the mornings that quickly goes away but other than that, I seem to be holding steady in regards to my pain levels. I have managed to wean off my steroid inhaler and currently take no medications for my autoimmune related asthma. That is a big deal. I am off my prescription migraine medication, another autoimmune medication called Plaquenil, and a medication that was being used to stimulate saliva called pilocarpine. I have noticed a small improvement in my dryness symptoms. My use of pain medication and Motrin has decreased.

I am able to do short periods exercise on a regular basis and am having less painful after-effects of the exercise as compared to before LDN. With the exception of the time period after I stopped prednisone, I have noticed an improvement in my mood and anxiety levels. I have not noticed any improvement in my esophagus/swallowing issues since starting the LDN. I had a few meals where I forgot to take my Procardia, which enables me to swallow more easily, and I immediately regretted not taking the medication. The LDN also has not made a difference in my reflux issues. The debilitating fatigue that I experience improved initially but I have been struggling with my energy levels since coming off the prednisone.

The only side effect I have noticed from LDN is insomnia. It has improved over the past month to the point that I am willing to continue riding out the side effect because the benefit is worth it right now. I am experimenting with some different natural solutions to this problem and it is also worth noting that I was having some insomnia issues prior to starting LDN.

So that is the scoop. I do have to mention that in addition to starting LDN, I have also begun going for allergy shots every week and have drastically changed my diet to an autoimmune protocol of the Paleo diet. However I did not start either of these treatments until after I had that three weeks of feeling great so I do strongly believe that the LDN has been a contributing factor in some of the improvements I have experienced. I am still on 3mg and am holding off on going up to 4.5mg until my insomnia is more under control as lack of sleep is a huge trigger for autoimmune symptoms.

Am I still skeptical? Sure. The improvements I have had could be a fluke but I don’t think so. I do think it is a situation where time will tell for sure. My goal is for LDN to keep me off the steroids. If that is the only benefit I get, it will be worth it’s weight in gold.

Low Dose Naltrexone

January 9, 2013 / / 54 Comments

In my last blog entry I discussed my current experiences with an integrative medicine doctor. (Going Down the Road of Integrative Medicine). In that entry, I mentioned a new medication I was prescribed by this doctor called low dose naltrexone (LDN) and I think that it is worthy of its very own blog entry so here we go. Be forewarned, it’s a bit complicated…

Since we have the modern day miracle of Google, I am not going to spend a lot of time describing LDN and exactly how it works, but I think there are some basics that are important. Naltrexone is a medication that was created in the late 1970’s as a treatment for heroin overdose and subsequently used in larger doses (50-300 mg) to treat heroin addicts. It blocks the opiate receptors in our body, which are also found on immune system cells. The next discovery, in the 1980’s, was that naltrexone at lower doses (hence why it is called low dose naltrexone), blocks these opioid receptors and increases the endorphin levels in the body, which were noted to be low in people with autoimmune disorders as well as in many other illnesses, such as cancer and AIDS. At lower doses, such as 3-4.5 mg, the LDN blocks the opioid receptors for a short time, a few hours. Once this blockade wears off, the body responds by increasing its production of endorphins and this results in cellular changes that inhibit cell growth, inflammation reduction, and healing. It is not an immune booster or suppressor, but rather an immune regulator.

OK, whew. That hurt my head. I have found two books to be extremely helpful in understanding LDN. The  first is: The Promise of Low Dose Naltrexone Therapy by Elaine A. Moore and Samantha Wilkinson and also Up the Creek with a Paddle by Mary Boyle Bradley.

Now, when my integrative medicine doctor told me that he wanted me to try this medication, he did not make any promises or unrealistic claims about its effectiveness. He did refer me to the website:
http://www.lowdosenaltrexone.org/ for more information. However after scouring this website, I became skeptical about the medication. I had a hard time believing that one medication, as seemingly harmless as this one, could effectively treat all the diseases that it claimed it could: autoimmune disorders, many types of cancer, and AIDS. Because if it was that effective, why were so many people still sick? Why didn’t more doctors and patients know about it?

After about a month of online research and reading the above two books, I had to admit that I was very intrigued by the positive effects LDN was having on some people with autoimmune illnesses, specifically multiple sclerosis (MS). Sjogren’s syndrome and MS can share an uncanny amount of similarities in terms of symptoms and many people with Sjogren’s are originally misdiagnosed as having MS. I also read many anecdotes about the success of LDN on other autoimmune illnesses such as Crohn’s disease and rheumatoid arthritis.

So WHY don’t more people know about this? Many proponents of LDN therapy claim that it is seen as an alternative therapy and that its use is not widely recognized because there is not enough clinical research done on the positive effects of the medication. There have been some small clinical trials done at a few very noteworthy medical institutions, but it has not been studied on a large scale. Why not? Well, pharmaceutical companies fund these trials and naltrexone is a generic, very inexpensive medication to produce. According to LDN proponents, there is no financial incentive. Despite the fact that this may sound like a conspiracy theory type of thing to a lot of people, with my less than favorable experiences in regards to the pharmaceutical industry, it all makes sense to me.

As I see it, there are two issues with LDN. The first is that the one major side effect it has is insomnia. This is something I have been struggling with significantly since last Spring, possibly due to another medication called Topamax. The second issue is that because it blocks opioid receptors, you CANNOT take any narcotic pain medications while taking LDN. If you do, you have to stop the LDN. Luckily, my rheumatologist is not a big fan of using narcotics to treat Sjogren’s related pain issues and I have adverse reactions to many narcotics anyways. Because of this, I have worked hard at learning and utilizing other pain management techniques. When things are really bad, I do resort to a pain medication called Tramadol. Because of its mechanism of action, Tramadol is a centrally acting analgesic, rather than a true narcotic. However I was instructed that if I do take Tramadol, to space it four hours apart from my nightly LDN dose.

LDN is routinely taken between 9pm-2am although some people say that it can be taken in the morning. However since endorphin production is highest around 2-4am, it is thought that this is the best timing for the highest effectiveness. LDN also needs to be specially compounded by a pharmacist and not every pharmacy does this. I get mine from Skip’s Pharmacy in Boca Raton, Florida. One month supply, not covered by insurance, costs me about twenty-five dollars with shipping.

So five weeks ago, after much trepidation and research, I decided to just go for it and I took my first dose of LDN. To begin with, the only side effect I have noticed is the insomnia and I will admit, it is pretty rough and worse than before I started the LDN. I have since weaned myself off of the Topamax, which I take for severe autoimmune related migraines, in the hopes that will help alleviate the insomnia. I already have a lot of alternative methods I use to help sleep such as meditation, herbal tea, etc. but like clockwork, I wake up between 1-2am every single night after going to bed around 10pm. Sometimes I fall back asleep and sometimes I don’t. However that all being said, I have been battling a bad viral infection this week and have been sleeping better. Not sure if that is because I am sick or not. Because sleep deprivation is a trigger for worsening of my Sjogren’s symptoms, before this week, I had been taking a sleep medication two to three times a week to help me catch up on my sleep. I was told by Skip’s that the insomnia should improve and possibly even go away within the next few weeks.

It is very hard to see a benefit from a medication like this when you have recently started other treatments as well. I started an autoimmune medication called Arava in October and an eye medication called Restasis in November. Except for a week exacerbation of joint pain on my third week of LDN, my joint pain has significantly improved and my eye doctor told me last week that my eye dryness has improved. LDN related? Possibly.

Since stopping my migraine medication, I initially had a week of migraines and they have since resolved. I am hoping it stays that way. If I continue to have a significant reduction in migraines or even complete resolution of them, I will absolutely attribute that to LDN because prior to LDN, I could not function without Topamax.

The improvement I have noticed, that I know cannot be attributed to other medication, is in my overall well being and my energy level. It is difficult to explain but does make sense considering LDN affects our endorphins. I feel more able to effectively cope with my physical symptoms when they do arise and my mood seems more stable. This is significant because I am still in the process of weaning off prednisone. There has also been a decrease in my anxiety level to the point that this week, I can say I have no anxiety at all. That is also significant as I am still waiting for some test results and this would naturally produce some anxiety for me.

At first, I did not see the improvement in my energy level. It was subtle. I also am not sure if it can be attributed to the Arava as well. Although I am still extremely fatigued by about 4-5pm each day, I have noticed that my days are becoming more productive. This is highly unusual, actually unheard of, when I am weaning off prednisone.

And that is where I am at five weeks into my LDN journey. In my head, the jury is still out as to how effective this treatment might be for me long term. I am hopeful.The signs so far are positive and I think time will tell; especially once I am completely off prednisone and hopefully the Arava as well. I also think that it is not a treatment that when used alone, will cure me. Rather, I think it is one more tool, along with exercise, supplements, diet, stress management, and multiple other modalities, that can be used in my long journey to improved health.

Going DownThe Road of Integrative Medicine

January 7, 2013 / / 6 Comments
 

“Progress always involves risks. You can’t steal second base and keep your foot on first.”~ Frederick B. Wilcox

 
 

I had been toying with the idea of seeing an integrative medicine doctor regarding my autoimmune issues for over a year. Integrative medicine takes into account the whole person and uses both conventional and alternative medicine as treatment. It focuses on body, mind, spirit, and community rather than just flesh, bones, and organs. It combines conventional medical treatment with complimentary and alternative treatments (CAM). Some of these CAM practices and treatments include dietary supplements, energy healing, clinical nutrition, and detoxification. Integrative medicine focuses on eliminating the cause of the disease rather than just managing the symptoms. Some people see integrative medicine doctors as quacks and some people view them as miracle workers. I know people who have seen them and the reviews have been mixed, although I would say I have heard more positive experiences than negative ones.

Despite the fact that the autoimmune illness I have, Sjogren’s syndrome, had been unstable for years (except with higher doses of steroids which are a nightmare to deal with), I had put off the idea of seeing an integrative medicine doctor. It wasn’t that I hadn’t dabbled in what I guess would be called alternative medicine, such as acupuncture and massage, but the idea of anything other than standard Western medicine making me healthier seemed foreign to me. Maybe that was due to the fact that I am an RN. I have been trained in traditional medicine and it is all I’ve ever known. However it was becoming clearer to me that perhaps traditional medicine alone was not going to be the answer for me. Not that I was looking for a cure mind you. I had accepted the fact that I have a lifelong chronic illness. But rather, I needed more effective tools and treatment to improve my quality of life because as it was, that quality of life seemed to be going downhill year by year.

So this past November I went in to see a doctor at Northampton Wellness Associates here in Massachusetts. The practice is a group of integrative health care practitioners. I will admit, I was skeptical but my skepticism dwindled as I spoke with my new doctor. We discussed my history and a lot of the things he said made perfect sense. For a while now, I have often wondered if my autoimmune problems were triggered by the radiation therapy I had for lymphoma in 1996. I was never a particularly sick child or teen but from 1996 on, one health problem after another crept into my life. I did not share this theory of mine with my new doctor (Dr. L) but he said the same exact thing to me. He thinks that I am genetically predisposed to an autoimmune disorder (my sixty-five year old father was recently diagnosed with one) and that the months of radiation treatments brought out the autoimmune illness. He was quick to point out that this was unavoidable. I had to have the radiation in order to save my life, but now we must also figure out the best way to deal with the end result of that possible trigger.

He also went on to explain that most of the symptoms I experience are autoimmune in nature such as my asthma, migraines, joint pain, allergies, etc. Now I had always thought this and my rheumatologist had made some associations, but the further back we looked into my adult health history, the more I realized how connected all my ailments were. Dr. L also stressed that there may be several other contributing factors to my autoimmune issues such as allergens, environment, diet. etc.

We came up with a plan. I agreed to go for allergy testing which would initially be done by blood work. He did warn me that the blood testing for allergies is not always accurate but it is the least invasive preliminary step in the allergy testing process. I ended up testing positive for two different mold allergies that are often found on certain foods and so I am now beginning to attempt to eliminate these foods. Luckily, many of them are gluten or dairy based foods, which I already have eliminated from my diet.

However my blood allergy testing also did NOT reveal a cat or dog allergy; both of which I know for a fact I have due to traditional scratch test allergy testing I had done years ago. I spoke with the allergy department at the Center and decided to continue on to the next step of intradermal allergy skin testing which I will begin next week. The intradermal skin testing is significantly more reliable.  I thought it was important because if there is any chance that allergens (especially to my dog) were contributing to my autoimmune issues, I may want to pursue non-medication treatment for it; specifically allergy injections.

Luckily, at this point, my health insurance covers a majority of the costs for Dr. L. My health insurance changed January 1st but at my November visit, I had my regular copays for the doctor visit and the blood work. I have checked with the Center regarding my new insurance which will have the same coverage as my old one, including for allergy shots if I do definitely go that route. However I am aware that there will probably be other suggested treatments that may not be covered by my insurance but my philosophy is to take that as it comes. I am also trying to look at it from the perspective that further treatment may help me eliminate some of my current prescription medication and overall health care costs (think hospitalizations and ER visits) and allow me to cut the cost of these, all of which have skyrocketed.

I made it very clear to Dr. L that I did not want to abandon my traditional treatment for the Sjogren’s at this time but yet, my goal was to eventually get off as many of my prescription medications as possible as I was on at least thirteen different prescriptions. That is a ridiculous amount of medication and I felt that I was probably having medication interactions. He was very receptive to this and said we would take it one step at a time. We would start with allergy testing, I would continue to wean off my steroids (which was my plan with my rheumatologist anyways), and he wanted me to start a new medication.

The idea of another medication surprised me coming from this type of doctor. It is called low dose naltrexone (LDN) and honestly, it is worthy of a blog entry all by itself. I had never heard of it before and it required a lot of research on my part. It is an “alternative” medication that he routinely prescribes for all of his autoimmune patients as it has been shown to have the capability to regulate the immune system and has had some good outcomes with certain autoimmune disorders. However I have only been on it for a month and am waiting a little longer to see how it continues to work out before I write that blog. The LDN can take a while to see a full effect so we agreed that we would meet again in February and see where things are at.



I liked the fact that Dr. L was treating this as a process and not overwhelming me with a million treatment options all at once because to be honest, I have seven or eight other specialists who are doing a great job at overwhelming me, no matter how unintentional it may be. I will admit, the process is very intimidating for me. I know about all things in traditional Western medicine. I know when to trust what a doctor tells me and I know when a doctor doesn’t know what he or she is talking about. As a nurse, I know about prescription medications (well except for LDN!) but not so much about supplements and herbs. It is certainly a learning process and one that I hope will prove to be beneficial.

Am I still a little skeptical? Sure. But I am also skeptical about putting toxic, possibly cancer causing drugs into my body as I have been doing. I am skeptical about dangerous side effects I may have, and have already started to have, from being on steroids the rest of my life. I am skeptical about the quality of life facing me until the day I die. So really, what do I have to lose?

What I Have Come To Understand

September 10, 2012 / / 12 Comments




In the two and a half years I have been writing this blog, I don’t think I have ever written a post about a doctor’s appointment with my rheumatologist. The appointments tend to be pretty significant since the rheumatologist treats the Sjogren’s syndrome. I am sure that I have mentioned events that have happened at certain appointments, but I think that has been the extent of it. I think the reason for this is because I don’t think people will be interested or that the post may be boring. Today I realized that I may have made a mistake. Sharing information from these appointments with my rheumatologist not only may help someone else, but it also gives other people the opportunity to give me feedback about their experiences with different treatments, side effects, and complications from medications.

I have had more severe symptoms than usual lately with some new ones thrown in for fun. Therefore I have been seeing my rheumatologist, Dr. P, more often than usual. These appointments tend to be  stressful for me compared to those with other doctors. Sjogren’s syndrome, like many other autoimmune diseases, often presents with a myriad of symptoms and often it is like trying to fit together the pieces of a puzzle. Is this symptom autoimmune related? Is it a side effect from a medication? There is the unpredictability of not knowing what the next step may be in treating the illness. Then there is also the fact that Dr. P’s office is an hour away from home, she is usually running behind (I have attributed this to the fact that she does not rush through her visits), and sometimes there is lab work to be done after the visit. From the time I leave my home to the time I pull back in the driveway, I am looking at a five hour trip. Exhausting.

I have  been more frustrated than usual with her, myself, and the whole Sjogren’s situation in general. I had just recovered from the whole Guillain-Barre/blood clots in the lungs fiasco when I began to develop severe, debilitating migraines thought to possibly be autoimmune related. After struggling to find a medication at a dose I could tolerate to manage these migraines, some of my Sjogren’s symptoms decided to come out and play; most likely because I had weaned off my steroids. Severe fatigue and joint pain worse than I have had in at least a year were the highlights. In addition to that, I have been having some significant urinary issues that come and go and that has prompted some further testing; the cause thought to possibly be autoimmune or medication related.

What this has meant is that Dr. P and I have been continuously trying to figure out a course of treatment to manage my illness. A course of treatment for an illness that has no cure and really no acceptable or standard form of treatment. If you have diabetes, you change your lifestyle, check your blood sugars, and take insulin. The end result is that most of the time, your illness can be controlled. Not the case with Sjogren’s, or many other autoimmune illnesses for that matter.

And there are only so many medications to try. Appointment after appointment Dr. P and I discuss the options and what may come next in regards to medications. She keeps wanting to put me on or increase my dose of prednisone. This gets me pretty worked up to say the least. If you have spent any time reading my blog, you will understand how much I hate prednisone. Here’s the thing though: as Dr. P said today, I am between a rock and a hard place and it is a matter of choosing the lesser of all evils. I have already been on many of the other autoimmune medications such as methotrexate, Imuran, Cellcept, and Enbrel. Cellcept did help quite a bit but made me so sick that my previous doctor had no choice but to take me off of it. Enbrel helped a little but not enough to justify the chronic sinus infections it was causing me to have.

As we discussed today, there are some other options to consider such as the medications Arava and Rituximab. But they are not without their risks as well. It is hard to make decisions, I am sure for her as well as for me, about which risks to take. Do we consider Imuran again and take the risk of liver damage and other complications or continue trying the steroids at different doses and see what side effects I can live with and risk long term complications such as diabetes, cataracts, and stroke? As much as I hate the prednisone, there is no doubt, it works for most of my symptoms. The problem is that I need a lot of it and the more I take, the worse the side effects are and the higher the risk of severe long term complications.

So our plan for now is to double up my prednisone dose to 15 mg for a few days and then slowly wean it down to 10 mg rather than the 7.5 mg I am currently on. We did this about two weeks ago when the pain and swelling got bad enough to interfere with my daily functioning and it worked but once I got back to 7.5 mg for a few days, the symptoms started up again. So this time we will only wean down to 10 mg. We agreed that 10 mg is the maximum dose of prednisone that is comfortable for me long term. Well, for Dr. P anyways. 0 mg is the maximum dose I am comfortable with but the reality is that my options are getting fewer and fewer and I cannot risk further Sjogren’s complications or live in this state of health.

What I came to understand from my appointment today is that there are no easy answers. Not even easy answers, but any concrete answers.

There is no medication in this world right now that is going to fix me without making me sick in some other way. Maybe someday there will be. But not today.

I am also starting to understand that I don’t think my body is ever going to go back to the point it was at before December 2008, which is when Sjogren’s started to truly ravage my body.

This does not mean that I still cannot do what I am doing; exercising, eating healthier, reducing stress. I will keep trying to control my symptoms through diet and exercise. I will live a healthy lifestyle. I will meditate. I will work with my doctors and stick with my treatment plan. I will laugh and I will play. But I guess for now at least, I am not going to place any of my hopes on any one medication to be the answer for restoring my body to the state that it was once in. Rather, I will continue to work with the body that God has given me in this moment and in this day to live in the best possible way that I can.















































































Photo Courtesy of Google Images

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