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.
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It's funny that you wrote this as I just finished writing a blog post about a similar issue I am having with the doctors. (It's in my line-up to be posted later this week.)
I am very interesting in Rituxin…what do you think about this? What were the affects of Cellcept? I am currently on LDN…Only for 2 weeks now and a very low dose. I also get infusions of alpha lipoic acid, and go for bi-weekly electro-stimulus thereapy – kinda wierd, but they hit the key acupuncture points and work on my next and face area (glands) quite a bit. It is a day to day roller coaster, but I feel something is starting to try and make a difference…now if I could figure out what?! Have you heard of or considered any of these approaches? I got tired of rheumys telling me there was nothing they could do for me…take care.
"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"——–>
Type 2 maybe…but NOT type 1. Type 1 IS an autoimmune disease. My daughter has had it since she was a teen, and it is far worse than what I go through with Sjogrens. I know all of us SjS patients are different, and some suffer more than others, but diabetes claims more lives every year than cancer and aids combined. As far as I know, no one has died from SjS. I'm not minimizing what you go through…I feel your pain! But the grass is DEFINATELY not greener…
Hoping you feel better with every passing day ~
Anonymous ~ That statement made in regards to diabetes was referring to Type 2 diabetes and not Type 1. I definitely was not clear on that and I apologize for the confusion; thank you for bringing it to my attention. Your point of mentioning that Type 1 diabetes IS an autoimmune disease is what I was talking about in that statement as well when I was referring to the "many other autoimmune diseases as well." I hope that you daughter is doing well. As you said, it must be a difficult journey.
In regards to the Sjogren's mortality issue: My understanding is that Sjogren's itself is usually not fatal but the resulting organ complication can be. Approx. 5% of Sjogren's patients also develop Non-Hodgkin's Lymphoma which can be fatal. Not comparable to mortality rates of diabetes, AIDS, or cancer by any means but something to keep in mind.
I am looking forward to reading it!
Heidi ~ I was so overwhelmed with information yesterday, that I haven't had much of a chance to research it but I will get back to you about it. I had a lot of gastrointestional issues, including bleeding, with the Cellcept and after 2 separate trials, had to come off of it.
I don't know what LDN or electro-stimulus therapy is for Sjogren's. Can you enlighten us?
Sjogren's is definitely life altering. It can be fatal if organ complications, brain damage or lymphoma occur. My rheumy and I have had long discussions on medications. Steroids used to work for my flares. Last year I had a one gram infusion of steroids and it did nothing to help the nerve pain. I have tried Cellcept and it did not do anything for me. Tried IVIG and gave me nothing but horrible headaches. Tried Rituxan and it did not help with nerve pain. I did hav a slight infusion reaction with the Rituxan. You need to make sure that you get premedicated with Tylenol and steroids. I am now on Imuran for the nerve pain. I have been on it since June 6th and it seems to be only helping with the nerve pain in my head. I still have nerve pain in calves, feet and now am getting it in my torso. Small fiber sensory neuropathy is painful. Rheumy has mentioned Enbrel but I am afraid of side effects and don't think I can inject myself. Christine, how did Enbrel work for you? I am going to give Imuran a chance. I don't like the nausea it causes. Rheumy also mentioned MTX injections. I have tried MTX oral for joint pain in the past and it did not do anything for me. Taking meds is a catch 22 and it definitely is trial and error. Best wishes to everyone.
I have had the same realization that managing autoimmune disease involves lots of trial and error and thinking through the risks versus benefits of medications and treatments. Nothing is perfect or without side effects and finding the right balance is clearly a challenge for both us and our doctors. Thanks for sharing the process that you and your doctor are wading through.
Thanks for your response Joe. The Enbrel helped some with my joint pain but not enough with the joint pain or my other symptoms to warrant staying in it. the reason for this was the repeated sinus infections it was causing and the risk of cancer, especially with my previous risk of cancer. I was willing to take that risk of it was going to dramaticaly improve my health but it did not.
I had some blood work done yesterday to see if I am susceptible to bone marrow suppression if she decides to start me on the Imuran after all so that may still be a possibility. Thank you for the premed information about the Tylenol and steroids. I did hear about that somewhere else as well.
I am curious. When you are having nerve pain in your head, does it feel like you scalp is very tender all the time? This is a new symptom I have been having for several months. It was originally thought to be related to migraines but the migraines are now under control. It improved dramatically during my last increase of prednisone which makes me suspicious that it is inflammation. Both my rheum and neuro do not know what the cause is.
Christine, I had the Imuran blood test and I am one of the 10% who are deficient in enzymes to break it down. So instead of receiving a full normal dose, I am taking a lower 50 mg dose. My scalp does not get tender. I just receive frequent searing and stinging pain, mainly above my left ear. Sometimes get it above my right ear. This and the burning, tingling, numbness on left side of lips and face have gone away since taking the Imuran. I am hopeful that it will slow down the progression of the nerve damage. Good luck to you.
I completely understand what you are going through! I am on my second week of no prednisone, after over three years of use, and I can barely get out of bed right now. The most severe joint pain I have ever had, migraines and fatigue. I have lost 12 pounds in two weeks and for the life of me, I still cannot get myself to call the doctor. Why? Because I know what he will say – back on the prednisone. I am already on methotrexate, Plaquenil and Cellcept, so there are not too many more options for me. This journey of trying to balance medications with side effects is very stressful, to say the least. Writing down the facts, the realities of our situation and choosing the lesser of two evils is very good advice. Doing our best to keep emotion out of the picture is not easy, but helps in the end.
Thank you for a wonderful post Chris.
Theresa
It always helps me Theresa when you respond/comment because it makes me see that my situation is not unique. I pray that you are able to find a plan that brings you some relief very soon!