I started Methotrexate almost a week ago; also Folic Acid and Trazadone to help me sleep and treat the possible Fibromyalgia. My 12 week trial with Azathioprine was not successful. I had an MRI last weekend to see if any progress was being made. My Dr. has readmitted the possibility of either Lupus or Fibromyalgia as a partnering disease.
My hands are much better with the sporadic use of Triamcinolone as needed. I had Gottron’s Papules that got horribly inflamed and were so sore, but they are so much better now, thank goodness!
I'm feeling pretty optimistic, as I know that there are a ton of people taking Methotrexate; which to me translates to - it works for tons of people! Hopefully it will work for me too.
In hindsight, the past 12 weeks went by pretty fast; but it didn’t always feel that way. As you may have guessed, Azathioprine was not the drug for me. In fact, it seemed to make me much more ill over the course of the trial. Brad and I met with my Rheumatologist, Dr. Grandits yesterday to discuss my options.
To my dismay, Dr. Grandits suggested, although previously omitted, that my Dermatomyositis (DM) appears to be partnered with either Lupus (SLE) or Fibromyalgia (FMS). DM is responsible for the “exhausted” feeling that I experience in my muscles. The achiness and pain however, would most likely be associated with another connective tissue disease such as the previously mentioned, which are common pairings for patients with DM. I do have severe pain and tenderness in all FMS correlated areas on my body. I have felt like I have been losing hair (a sign of SLE) but also recognize that my hair is about 3 times as long as it has been in the past 20 years.
A diagnosis for Lupus of Fibromyalgia will be the result of a process of elimination as we continue to experiment with treatment options for my DM. To me FMS seems to be the culprit, but apparently Lupus likes to masquerade as Fibromyalgia, so who knows.
I had blood work done on 11/25, my white blood cell count was low – but that is to be expected when taking an immune suppressant. My other blood work continues to appear normal, as it mostly did all along; so we need to rely on my biopsies and MRI’s for any signs of progress. I will be going in for another MRI in the next couple of weeks to see if the muscular
inflammation is improving at all.
We will continue to do MRI’s at intervals to track progress. Once my muscles begin to show a reduction in edema, I will start physical therapy. I will do my PT at Sister Kenny Center, and then Brad will help me follow a daily plan at home.
My new DM medication is called Methotrexate (MTX).
MTX is a chemotherapy drug, but used in lower doses it can be very effective in treating diseases like DM. This medication is taken either by 10 pills or one injection at a time, one day a week (to reduce side effects). I will start with the pill form; after 3 weeks if I am [still] feeling too nauseous, I’ll switch to the injection - which I can do myself. This medication could make me feel exhausted or nauseous for up to 24 hours after taking, so Brad and I decided that we’d take it on Sunday mornings.
Thankfully, the MTX doesn’t take 12 weeks to show whether it’s working or not. I should know within 6 weeks if it’s the one for me! To offset some of the side effects of MTX, I will be taking a large dose of Folic Acid as well.
My 3rd new drug is called Trazadone, which serves two purposes. First, ever since I have been sick, I haven’t been able to sleep which is making me even more tired, achy, exhausted and emotional. Trazadone is an effective, and non-habit forming sleep-aid. The second reason for taking Trazadone – it has been shown to alleviate the symptoms of Fibromyalgia, one of which happens to be difficulty sleeping. I am really looking forward to sleeping through the night again; I can only imagine how much that could help me.
Dr. Grandits mentioned that I seem to be a candidate for Plaquenil as a long-term treatment drug; once the disease has been managed by the more aggressive medications that I am using now. This was good news for us, since Plaquenil is a more gentle drug on your body; you can also safely have a baby when taking it. For now, babies are out of the question, as MTX has been put in “Pregnancy Category X” by the FDA.
I am still on the waiting list to see a Specialist at the Mayo Clinic. For now, I continue to rest; I have a check-up in 3 weeks. I have been pretty emotional in the past month or so, from feeling fine with everything to depressed. I think that the Azathioprine wore me down too far and that really got to me. Now, I’m more at the point where I don’t really care what else they tell me I have; just fix it.
I have been off of the Azathioprine for just over 24 hours, and I’m already feeling hungry again. I’m in a lot of pain today, but I will continue to take Ibuprofen and Tramadol (non-narcotic pain killer) until [hopefully] I don’t need it anymore. I start the Trazadone & Folic Acid tonight; the MTX on Sunday.
In case you have had any doubt, Brad has been beyond wonderful as always. God really picked a good one for me. My true partner in life; we’re going to get through this together – daydreaming about that healthy time keeps me positive and optimistic. My little Pronto and Rosie make me laugh and smile every day, and keep me company on the couch.
I hope that all of your holidays are off to a great start! As always, thank you for being so supportive. I have really been lifted up by all of the positivity and love that is surrounding me every day, so thank you for that.
I'm on the front end of week 12 with Azathioprine (Imuran) . I was told that it could take up to 12 weeks to show if it’s working or not. It's not. I’m really frustrated, and I feel worse than ever. I take 2 Tramadol in the morning and at night to help control the pain. I also take large amounts of ibuprofen to supplement the Tramadol on tougher days.
So, Tuesday I begin my next medication trial. I am a little nervous about which one it will be, but I just desperately want to feel better.
My hands are much better with the sporadic use of Triamcinolone as needed. I had Gottron’s Papules that got horribly inflamed and were so sore, but they are so much better now, thank goodness!
About 3-4 years ago, I started to have a hard time drying my own hair – friends remember me saying what a pain in the butt it was, but I thought nothing of it. I used to be a hair stylist, and I thought that I was probably losing some arm strength from not being in the salon anymore. I also started to notice small red bumps and sores on my knuckles.
I went to my dermatologist to see what the bumps were; she quickly called them warts and moved on. A year later they were worse, I asked if she could help them because they hurt, and she gave me a strong Retinol cream that didn’t help at all and told me that if I wanted to, she could laser them off for me.
Finally this past December (2009) I went in to laser treat my hands. I had over 20 spots that were painfully laser treated. I was told that they would bruise and then go away. I thought that I was done with my “warts”. In the days that followed, my “warts” became badly inflamed, infected open sores. I went to an Urgent Care where they told me that if they became any more infected, that I could lose a finger to amputation. I was devastated and in SO much pain. When I called to try to talk to my Dr. about it, she blew me off and acted like it was my fault.
Months later, and finally healed, it was time for me to get my 6 month skin check (I am very fair and freckly). I didn’t want to see my old dermatologist again, so I did some research and found a new one. I went in to see her in June; she took one look at my hands and said “Dermatomyositis.” Those “warts” were Gottron’s Papules. She asked me if I had been feeling tired or if it was hard to raise my hands over my head and shocked, I said “yes”. Two biopsy’s later, she officially diagnosed me, but I had no idea what was ahead of me.
I was immediately sent to get a mammogram, have TONS of blood work done to check every single thing in my body. I went to the rheumatologist, had an EMG, MRI, CT scans and a muscle biopsy, and everything all within a month. I was scared, confused and exhausted.
All tests came back clearing me of cancer, but also showed extreme edema and atrophy in my muscle tissue, all consistent with DM. Although my CK hasn’t been consistent, my ANA always comes back sky high (1:320). Oddly, this made me feel good. It was like getting a pat on the back for fighting the weakness and fatigue that I had been feeling over the past few years.
At first I said that I would have never gone to the doctor for how I was feeling; since I just thought that I was old and out of shape. Thank God that I did know though, as in the following months the disease seemed to really kick in. I began having a much more difficult time going up and down stairs, raising things to put away in the cupboard at home, and drying my hair has become nearly impossible.
Initially, I was very happy with my Rheumatologist. She came highly recommended, and had 6 other patients with DM. Over the past 10 weeks, I have been underwhelmed by her attentiveness. She seems much more concerned with 2 of them than me, since they are much sicker than I am.
Now, I just wait; 12 weeks is on Nov. 30th. I am in pain, I’m scared, and I can’t get the kind of answers that I’m looking for. I feel like I am losing my trust in my doctor. I am on the waiting list to get into the Mayo Clinic, but am trying to escalate it.
I try to be as positive as I can; and I have so much in my life to be happy about. I am surrounded by an amazing support system, but can’t help but continue to feel alone. I feel better already just knowing that there are 33 other people in this group that I could learn about their stories, successes and challenges. Here’s to us!
Any helpful suggestions for those just diagnosed?
Surround yourself with people who love you and support you.
Get a therapist, immediately. You need someone to unload to, and sometimes your parents, or spouse need a breather; or they just can’t help but respond with solutions and sometimes you just need to vent! Not to mention, it feels lonely, and it helps to know that what you’re feeling is okay and you don’t have to feel guilty about it (I did).
Bring someone you trust with you to your appointments to take notes!
Keep EVERYTHING in a binder – all the different doctors you see aren’t as organized as you think. Ask for copies of every report and result for your records.
Stick up for yourself – and fight for what you need, and what you deserve!
Don’t settle for the “Dr. jargon” make them explain things until YOU understand.
Get another opinion.
Take care of yourself. Allow yourself to be in a cocoon to heal, and just worry about you for a while.
I had my results appointment with my rheumatologist, Dr. Grandits on Tuesday and began treatment. This is a lot of info – so if you’re interested dig in, if not – the first paragraph will probably do the trick for you!
I’ll be taking an immune-suppressant called Azathioprine (also known as Imuran) twice a day indefinitely, depending on how it works for me and how I feel. I should know if my body is rejecting it within 2 weeks, I could start to notice an improvement in 3-6 weeks, and we’ll know if it’s working in 12 weeks. I’ll be back for a check-up in 6 weeks, to see if I am ready to begin physical therapy. I will also be going in for blood work every 6 weeks indefinitely to monitor the disease. I can assume that I will take this drug for at least 2 or 3 years; then we can reassess to see where the disease is at and possibly switch drugs, or take a breather. I’ll need to have another MRI every couple of years, and maybe additional biopsies too. I will continue to use the Triamcinolone on my hands when needed; and have 6 month follow ups with my dermatologist.
Azathioprine is an immune-suppressant drug that was created for transplant patients. The drug slows down your white blood cells so they’re not fighting things as much in your body. Some people notice that they are more prone to upper respiratory infections, and that they’re less resistant to colds etc. There are the freaky risks of lymphoma, cancer and all that crap and I am just not worrying about that right now. Remember that as of now, everything on the inside looks good (liver, lungs, etc.) and that is really good news.
Some things that I learned at my appointment:
• I can still have flare ups where I feel like crap and my body hurts; there isn’t a way to tell of frequent, if at all that would occur.
• Dr. Grandits currently treats about 6 other patients with dermatomyositis (DM). 2 also have lupus, 2 just got out of the hospital, 1 with only the skin issues, and me.
• I can still be an organ donor, and most likely donate blood (as long as I’m healthy)
• I can most likely have a baby. I am not advised to take my medication during pregnancy, so we will have to revisit when that time comes. They say that you can take medication if the “benefit outweighs the risk.” Whatever the hell that’s supposed to mean; like I would ever want to hurt a baby; but if going off the drug will kill me, I guess we’ll just have to cross that bridge when we get there. If I did decide to stop taking the medication, then I would need to 3 months before trying to conceive. There are a few alternatives that I could take while pregnant, too.
• Until I can start physical therapy, I am not to exercise at all; since all that does is irritate the muscles more – which make the white blood cells freak out and attack me.
Below I have a picture that shows that muscle groups that are affected by the disease. To the right is what my muscle biopsy looked like; Brad and I got to see it. My muscle slides looked a little more intense than the example shown here. The little fibers were in varying shades of red and pink – bright red when they were infected/inflamed (edema) and some even had little streaks in them. The fibers that were dead were a pale pink or white. The while blood cells were swarming these two types of fibers. Then there would be areas that were fine. Weird. Anyway, Dr. Grandits said that perhaps the disease is so focused in my tissue right now that it hasn’t fully entered my blood stream; which may explain why some of my tests have been inconsistent.
So, that’s where we’re at! I have included a few websites if you’re fascinated… personally I am ready for a break! I did accomplish my personal goal of getting through this part before the big 30th birthday, so that feels good. Now to just wait and see if this medication is the one!
Thank you for your support, positivity and prayers. Knowing that I have so many wonderful people who care has really helped me (and Brad) get through the tough times.
First – Remember starting on Friday if you want to email me – you have to email firstname.lastname@example.org because I’ll be out of work from 7/30 to 8/16.
I’m sorry if this is the first that you’re hearing about this. I have been in a whirlwind of tests and appointments, and just haven’t been able to connect one on one with everyone that I wanted to share this with. I have been diagnosed with an autoimmune disease called dermatomyositis and here’s everything that I know so far! This is the reason that I have had ugly hands for the past 4 years or so, and also why I am so exhausted all the time, and why I have felt really weak – and even gradually stopped blow-drying my hair! I’ll have it forever, but many people have a remission-like experience with treatment.
I have included the past results that I sent out too – so you can read if you would like. I’m going to be fine so don’t worry – but I have been pretty stressed out, and have been feeling down and sometimes a little scared; so I am so grateful for my amazing friends – you mean the world to me and always cheer me up!
Here’s a site that explains a myositis pretty well:
I have some more results for you today (if this is the first you’re reading about this you might want to read from the bottom up):
Blood work from 7/15/10:Same as the 1st round – although this time my CK was lower, which is right on since the week of the 12th I felt great. The following week up to now I don’t feel so great – so you know that my CK has gone up again. The CK is a perfect indicator of my current energy level. The tests that were looking for the piggyback diseases came back normal which is great! No lupus, or any of those guys – YAY!
MRI 7/21/10:Don’t know these results yet – but will show any tissue damage and inflammation.
EMG 7/26/10:This test came back totally consistent with a myositis – my upper arms and upper back/neck/shoulders, hips and thigh muscles all show irritation and inflammation. This is good – because since this is right on the diagnosis, it will help my rheumatologist help me feel better. This also will most definitely mean that I need to do physical therapy.
Hopefully I know by my surgery on Friday (unrelated, but needs to happen before I begin the new medication) if I still need to do a muscle biopsy – so they can do it at the same time. Other than that, I’m done! Brad and I go back to meet with the Rheumatologist on August 25th for a long-term treatment game plan and I might even begin my treatment as early as the 17th.
Even though it stinks to be going through this, I am grateful for all the information. It feels really good to know that I’m not just “getting old” like I thought and I’m not as weak and out of shape as I thought. I am excited to turn 30 feeling great and with lots of good things to look forward to!
Thank you all for you positivity and support. I appreciate it more than you know!!!
So! Today Brad and I met with the Rheumatologist to get a game plan on completing the diagnosis.
I will have an MRI of the left side of my body and an EMG on the right side of my body. These tests will look for muscle weakness and inflammation, which is associated with the myositis. Depending on the results I may or may not have a muscle biopsy to look for additional inflammation. These results will help the Dr.’s better understand how progressed the disease is in my system, and also double check of any other conditions that might be present and associated with the disease (sometimes they piggyback off each other). There is a chance that it has hardly progressed and we can stop it where it’s at now with medication. The Dr. did say that the fact that I have had this for 4-5 years is a good indication of a very slowly progressing disease. Either way, I will most likely begin medicinal treatment mid August, and I may also start some physical therapy to get my body stronger again.
I also had anther round of blood work done. I have no idea what they’re going to determine, but will share the results as I get them in the next week or so.
So as of today – I think that we can see a light at the end of the tunnel. Hopefully, everything will be squared away, the diagnosis can be complete and treatment can begin [with only follow-up appointments] in the next month! It would be nice to have the scary and unknown part all behind me by the big 3-0 so I can just concentrate on moving forward and being well!
Thank you for the support and positivity! I’ll keep you posted!
*Previously I was given a diagnosis from two separate biopsies done on the "Gottron's Papules" on my hands.
Here are the most recent results, if you are interested.
2nd Biopsy 6/25/10:
Same as the 1st - consistent with Dermatamyositis.
Blood Work Results from 7/7/10:
Protein/i.e. Blood Cancer Great
Blood Count Great
These results are good because more progressed forms of dermatomyositis show the liver failing and blood affected.
This is good news!
Typical for the tired/exhausted feeling and an increased count is very typical among dermatomyositis.
This test is often used to track the progress of the disease.
This came back elevated = in the high range
This explains why I often feel exhausted.
ANA = Antinuclear Antibodies Panel
A non-specific auto-immune marker (i.e. indicates whether an auto-immune disease is active in your system).
This test will come back positive for a number of auto-immune diseases, like the 3 types of myositis, lupus, muscular dystrophy, etc.
My results came back very high/positive.
Negative is less than 1:40
My count is 1:320
This is a specific dermatomyositis marker.
These test results should be back any day now.
We assume this is going to be positive, due to the bodily symptoms, Creatine Kinase & ANA results, and Gottron’s Papules on my hands.
I meet with the rheumatologist next week to do more blood work, schedule body screenings, among other tests to check to make sure that I haven’t developed cancer anywhere and to determine how progressed the disease is in my body – in terms of muscle weakness, etc. We will also be beginning to discuss my treatment options.